Monday, June 21, 2010

Why I'm Not Thrilled About Summer

Today's the solstice. In my neck of the woods, that means 15 hours and 12 minutes of daylight. Except for early morning and late afternoon, I'm supposed to avoid being outside during that time. But I don't. Someone has to go to the bank and buy groceries. I put sunscreen on and a hat, and try to stay in the shade. Today I'm taking a walk in the park with a friend. It's fairly shaded, but if I wanted to be absolutely safe, I'd wear long sleeves and pants. Since it's supposed to be 90 degrees, that seems excessive.

The sun triggers graft versus host disease which is currently making a scene on my usually unblemished face and neck area. I look like I've either been in a fight or crying for days. A scaly rash paints the side of my face and tattoos my eyes with crescent moons. My lips are cracked and in constant need of petroleum jelly. The upside is that I'm alive and writing to complain about my dermatological demons. Whatever's attacking my face is making it hard for leukemia to gain a foothold. This I can live with.

All three kids are home. Harry starts a job tomorrow. Mariel and Mark have interviews this week. I will be abandoning them on and off for the next couple of weeks. Tomorrow I'm driving up to Rockport, MA to visit friends. Friday I head to NYC for a possible house closing in the Catskills and an anniversary dinner in Manhattan on Saturday. Then I plan to spend several days in our new house getting phone and electric service and finding a painter to so some minor work. We may rent a truck and move in the end of next week.

Then I will be living in three places. Three very nice places.

Thursday, June 17, 2010

The Hungry Hungry Hippo

Mariel and I spent yesterday in Boston seeing doctors. Oy. Dana-Farber was okay. My counts are good (normal platelets for the first time since transplant). My doctor took one look at me and said: chronic gvh. It's official, folks. I'm fortunate that my donor is attacking me, and the skin is better than other organs such as my liver or gut. The bad news is, I have to increase the prednisone to 60 mg. a day and start taking rapamune again (1 mg.) I also have to continue taking all preventative meds because the pred and rapamune suppress my immune system.

60 mg. of prednisone is the most I've ever taken and I expect my appetite will get better than it already is. That means I will have to exercise more or soon look like a hippo. My half-moon face will be full moon in no time. If I'm lucky, I won't be on this dose for long. My donor will get the hint and behave himself.

I was still able to get my immunizations, three of them: DPT (diptheria , pertussis, tetanus); Pneumococcal Pneumonia; HIB (haemophilus B). I'll get more in two months.

Then it was off to Massachusetts Eye and Eye Infirmary for an appointment with an ophthalmologist who specializes in gvh. It was supposed to be nine minutes away, but that nine minutes soon became an hour as we repeatedly drove past the building on a Kafkaesque highway that seemed to have no exits. Mariel slept in the car while I spent two hours having my eyes examined by various technicians and doctors. The result? No gvh but plenty of recommendations for what I should do with my eyes. Mariel drove home, a rush-hour fueled nightmare of epic proportions.

Time for breakfast. I will be devouring blueberry buckwheat pancakes and then going to yoga.

Sunday, June 13, 2010

Dinner with My Doc

We had dinner last night in Providence with my local hematologist-oncologist and his wife. I liked this guy from the day I met him. This was our first social visit.

We've spent a lot of time together and have come to know each other quite well. He has two kids the same age as my younger two and we've talked endlessly about the perils of parenting, college applications, majors and the like. He has a lot of angst on the subject; maybe he saves all the anxiety of treating very sick patients and transfers it to his children. I'm a lot calmer in this arena; maybe I spend all my anxiety on health issues and spare my children in some ways. I say some because I know they have not been spared.

In all the years he's known me, he's only witnessed one breakdown. I know how to control my feelings, even sparing doctors my black moods. Oh, I cried once when he wouldn't let me out of the hospital, but that didn't alarm him; it only made him feel bad.

I'll admit that seeing him dredged up a thick and disgusting stew of dark emotions, before and after dinner. What I usually keep the lid on rose up and hit me from behind. Ouch. Still, it was a very nice evening, and I'm glad we did it. Part of me hopes I never see him again, this man who helped save my life. It's too close for comfort.

Monday, June 7, 2010

Graduation Redux

Happy Family II

We've run out of children, finally. Baby Harry has been launched into the world. Marty's family came from Iowa, Florida and Pennsylvania to celebrate. Mine came from Long Island. We went to a local restaurant for dinner, so-called Tuscan soul food. It was a success no matter its origin. We came home for cake, a concoction called Death by Chocolate which managed to flatten several guests. Better to go by chocolate than illness or disease.

Now we can concentrate on the other exciting events before us. In no particular order, we have a house to sell, a house to buy, Father's Day, Birthday and Anniversary celebrations, a family vacation to Prince Edward Island in Canada, and seeing if hydrocortisone cream can get rid of the rash that's creeping around my face and neck. Next week I'll see my doctor for a check-up and he can decide if it's chronic gvhd or not. I'll be getting my first round of immunizations, too.

We're moving on.

Tuesday, June 1, 2010

The Graduate

Happy Family

Mariel graduated from Swarthmore College Sunday with a BA in Psychology. In addition to her diploma, she received a planting from the Arboretum, where she and every grad has a plant named for them.

It was a gorgeous day, hot and sunny, and the ceremony was held in the outdoor amphitheater. Highlights included watching Mariel receive her diploma, listening to excellent speeches, including one by Stephen Lang of Avatar fame and a Swat alumnus, and watching as light bulb-topped mortarboards of the engineering students lit up as they received their degrees. The final recipient, rather than a switch, had a twist-on bulb. Very Swarthmorean.

I will eventually add a photo of the graduate and proud family. I left my camera at my sister-in-law's house.