The Red Sox

No news is good news… yes or no? In my case I’ll go with a qualified maybe. For the last month or so I’ve held steady, in a medical sense, and it is a better steady than the one I was going through previously. Before, my “counts” slumped in a regular predictable way… steady. Now, steady means that my counts are not changing, not rising, not falling. That is an improvement. It is an improvement that I haven’t needed transfusions; it is an improvement that my Hickman line (a venous catheter) was removed. With the Hickman line gone I am freer to exercise, that is good.

What sort of patient am I?

(I’m going to indulge in some sports metaphors.) There must be patients whose treatment and progress is like the record of our N.E. Patriots. Sunday night they won their eighth game in a row to achieve a perfect season so far. The Patriots played the Red Skins who have a pretty good record and I had high expectations of a good, maybe close game. The Pats blew them out, 52 to 7, the challenge I foresaw didn’t materialize. There must be medical patients that go through their treatments in the way that the Patriots go through their schedule. One of my nurses told me of a woman who returned to work 2 weeks after her bone marrow transplant. The Pats move forward with confidence born of experience. Of course, they are going to succeed.

Then there are the Red Sox. Think back to the ALCS against the Indians. There we were in Cleveland down 3 games to 1. Either we win 3 games in a row or go home defeated. What are the responses that this situation elicits? The pessimists say that it’s hopeless; we have to show up but, put in a weak effort and expect to lose. Manny Ramirez said its ok, if we lose there is always next year. The optimist says that we aren’t out yet, we won’t be done till the last out of the last inning, why should we lose? The Red Sox are clearly optimists. As we well know, they went on to win the ALCS and what is equally remarkable is that the majority of runs scored by the Sox were made while they had 2 outs against them.

Most patients face circumstances analogous to the challenges and progress of the Red Sox. Very few fall into the “Patriots category.” What is clear watching sports and what is even more obvious as we go through medical procedures is that we don’t get to specify what challenges we face; at best we can control our participation in our challenges. Does our attitude and participation in our medical treatment make a difference? Does the Red Sox attitude matter to their success?

What sort of patient am I?

I ask myself often and try to do what little I can.

Bottom third

Three weeks in a row without a transfusion, this is a breakthrough of sorts. I’ve been getting transfusions on a regular weekly basis since the bone marrow transplant 3 ½ months ago. The transfusions have been red blood cells; I’ve been consistently on the anemic side. The pattern has been that I get a transfusion on Monday and on Thursday I’m okay, I don’t need a transfusion, but on the following Monday my counts are back down to the point that I need another transfusion. And so it goes, week after week.

Most patients that are recovering from a bone marrow transplant, of the sort I had, recover their counts faster than I have been doing. Dr. Alyea graciously puts me in the bottom third of the class. I say 'graciously' because the bottom third includes the bottom tenth as well, doesn’t it? I don’t mind being one of the slower cases as long as I’m still moving forward and taking the long view I see that the trends are all up.

Le Pain

Thirty years ago I was introduced to Julia Child’s two volume, 1,239 page, treatise on French cooking, Mastering the Art of French Cooking. It is impressive; there are detailed instructions for every step of each recipe. Makes you think that French cuisine is tricky; it must be… there are so many details to illustrate. My wife, Barbara, who was then my fiancé, challenged me to master French bread. She yearned for the baguettes she loved in Paris. She lived there for a year after college. The recipe for French bread required only 29 of the 1,239 pages. My previous experience baking bread was while I was in college and I had made it up as I went which explains why I made bricks. My bricks, I mean loaves, came out in various shades of brown but they had a consistent feel: dense and brick-like.

I rolled up my sleeves, studied the text and illustrations in the book, visited the lumber yard and the tile store. I measured and stirred and kneaded and slashed and spritzed and splashed and baked. I baked and practiced and learned and amended. With time and attention paid to the task I found success. With her arms flung around my neck, Barbara showered me with praise, this bread was better than what she had in Paris. We married the following spring. Everybody loves this bread; it is fragrant with a crisp crust and light chewy crumb. Never has a loaf gone stale.

In 1989 I bought Julia Child’s The Way to Cook. This cookbook includes instructions for French bread too. The recipe is only 11 pages long and incorporates new technology invented since the writing of Mastering the Art of French Cooking. The preparation of the dough is simplified by the use of food processors, a new fangled kitchen appliance. Other aspects of the original recipe were streamlined and simplified. The final product is just as good and the preparation time is less. The level of skill required is also less, letting machines do some of the work. Even with the greater ease of the “new” method I didn’t bake French bread very often. I really saved the extravagance for special occasions.

In the fall of 2006 Mark Bittman a writer for the NY Times revealed to his readers a method for making excellent bread, with the same qualities as Julia Child’s French bread, that had been invented by Jim Leahy of the Sullivan St. Bakery in NYC. The result of Leahy’s recipe is a loaf with a robust crust and an aromatic, chewy and moist crumb. It is delicious. The big deal with Leahy’s recipe is that the skill level needed is minimal and the time invested in making the bread is quite small. A little planning is needed since the dough is made the day before the bread is baked. It takes me 7 minutes, total, to make the dough and clean up after myself. At the other end, I need to be around the house for 3 hours to form the loaf and bake it. I’m not working with the dough for 3 hours but I do need to be there to do the few final steps. I make this bread often. The link below takes you to a web page where you can scroll down a bit to a video showing the process and to the recipe. Want to try it?

http://boards.epicurious.com/message.jspa?messageID=567096&tstart=0

By the way, I was at Dana-Farber today and it was the second visit in a row that I did not need a transfusion.

Moo!

I was told that after the transplant that I would have the immune system of an infant. This new me would have a different immune system than I had previously or that my brother, Michael my stem cell donor, had. My new immune system will not remember fighting off germs and the protection that gives me. I had chicken pox when I was a kid, I should never get them again, right? I can get chicken pox now, new immune system, baby immune system. I get that. It is why I have to be so careful around sources of germs especially viruses.

What I didn’t get is that the immune system is responsible for allergies. I have developed a new allergy. The hints were undeniable, something was wrong. I was running to the bathroom a dozen times a day. I will spare you the details, even I don’t want to know (or remember) the details. Let’s just say that the Imodium was woefully ineffective. I experimented by excluding foods from my diet, reaching the inescapable conclusion that I had become allergic to dairy products: milk, butter, cream, cheese (wonderful cheese…)

I am already a vegetarian, have been for 3 decades. Now I’ve just become a reluctant vegan. This means a significant change in what I cook, isn’t everything better with melted cheese on top? (OK, not Asian food.) We’ve had to explore the wacky world of soy yogurts and margarine and non-dairy sour cream/cream cheese. (Oddly one brand, Tofutti, is surprisingly good.) This adjustment to my diet has meant some serious compromise. Pizza without cheese is not the same dish, though a pizza can be tasty with a thoughtful assortment of veg. I’ve acquired a taste (by persistence) for coffee and tea plain, no milk or creamer.

What it really boils down to is that I don’t mind sacrificing the dairy component of my diet to have a calm and functional tummy. I still get really excellent food; Barbara, my wife, made a vegan cake yesterday that is one of the best cakes I’ve ever tasted.

The doctor reckons that this allergy to dairy is likely to be temporary; I’m hoping he’s right. I am still visiting Dana-Farber once a week and during these visits I usually need a transfusion of red blood cells. I’ve been feeling well and continue to enjoy the nice weather out in the back yard.

Missing out...

It’s been a while since I last wrote an entry in this blog. Perhaps it’s been too long because I’ve gotten a few emails lately asking if everything is ok. Yes, things are going well, I feel well. In fact, I’m writing this while in the lobby at Dana-Farber. My check-up is ok and my lab results show that my white blood cells and red blood cells are a bit on the low side. I can fix the white blood cell count with simple injections that I can give myself at home. The low count of red blood cells means that I need to stay to get a transfusion of red blood cells. This is something that I can do right here in the Dana-Farber clinic. Getting transfusions has been a regular part of my visits here. This is not unusual for me as I’ve been getting transfusions on a weekly basis for about 3 months now. It is not painful, it is not uncomfortable, it is just deadly boring. First there is the waiting for my blood to arrive (usually 2-3 hours) and then there is the time I spend while the blood drips in (2 hours.) I have to say though, that sitting through a boring day at Dana-Farber is a small price to pay for the kind and quality of care that I receive here.

In an effort to protect myself from sources of infection I live with a long list of rules. The rules tell me what I can eat, where I can go, what I can (or must) do. I am essentially under house arrest. If I wear a mask and gloves, I can go to see the doctor. But as for getting out of the house, that is about it. One of the things that I miss most due to the confinement is school and teaching. I really miss being at school. School started up about a month ago and it is the beginning of the school year that I especially enjoy. Each new year brings a fresh batch of eager students. Their enthusiasm and willingness to work doesn’t always last but it is always present at the start of the year. It is great fun. I have new ideas to try out, I have a stack of freshly printed papers to pass out to the students, I have my room all nice and tidy and welcoming. I really miss being at school. Touching base with colleagues and sharing stories is a nice way to pass a free period. There is always some interesting news floating along the grapevine. I really miss being at school.

Lately I’ve been sitting outside my house in the backyard enjoying the cool weather and the few remaining birds in the woods. It has been a good summer for sitting outside, and it is one of the few places that I can go… very pleasant. It is not much freedom, but it helps.