Steady On

I haven’t written since March 14. I am in my back yard, computer in lap, trying to figure out how to summarize the last couple of months. To start, I’m feeling quite well and am enjoying the scene here in the back yard. I put up a bird feeder 2 weeks ago and the yard is full of critters. I like sitting in the back yard; it is peaceful but engaging, especially now that we have critters. Read what Barbara has to say about our new improved back yard.

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When I left off in March I was about to start a series of infusions of Rituxan. I completed that treatment and my red blood cell count is steady at a usual level for me (low for you but ok for me.) The bid medical excitement was that my brother Mike (my bone marrow donor) came for a week and donated a few billion lymphocytes some of which were then infused into me. Lymphocytes are one kind of white blood cell. By infusing me with Mike’s lymphocytes my immune system and marrow are further transformed into the new me. Jeff 2.0. All of my blood disorders are due to my old immune system and bone marrow. Any significant change due to the infusion should show up in a couple of months from now. Patience.

A lot of time has passed since the transplant last summer; it has been 10 ½ months. As time oozes by I am healthier and allowed to do more. I am returning to teaching in the fall, ok with the doctor and all set up with the school. I can go out kayaking. I can go to a weekday matinee movie. I can eat in a not-too- busy restaurant. I am making plans to be with my family for a reunion in late July; we will meet in Sedona, Arizona.

So… lots to look forward to.

Follow up to Dana Farber

I went back to Dana Farber on March 10. My hematocrit had remained unchanged from a week before. The good news is that the crit had not fallen farther and the docs were not saying that I need a transfusion of red blood cells. Additional good news is that the drop in red blood cells is from Hemolysis (I am destroying the red blood cells) not cancer or myelodisplasia.

The plan is to start me on a course of infusions of Rituxan which is used to “turn off” the Hemolysis. I’m writing this email from Dr. Kasturi’s offices in Worcester where I am receiving the first of the 4 infusions of Rituxan. As is usual, when I got to the doc’s office this morning the first thing was to draw a little blood for labs. Surprise of surprises, my hematocrit is back up to where it started before the 6 pt drop a couple of weeks ago. Medical mysteries are just to keep me on my toes I guess. There is no reason to think that the Hemolysis is gone but it may mean that I am now producing red blood cells faster than I am destroying them.

As usual I feel fine.

Monday at Dana Farber

For quite a while there hasn’t been much medical news to write about, so I have only written occasionally and mostly about other stuff.

I went to my regularly scheduled monthly visit to Dana Farber on Monday.

For months I've been saying that my recovery has been at a plateau, no real change in the lab results, no further improvement in my recovery. And I follow that with the reassuring news that I've not had a set-back. Monday's news feels like a set back. It feels like a set back to have my hematocrit (% of red blood cells) drop 6 pts in a month. What it means we won't know till next week when results of additional labs come in. This problem with red blood cells is not likely to be because of the cancer or myelodisplasia. It is more likely due to hemolytic anemia, which I have had to deal with before.

The doc at DanaFarber was optimistic that we could figure it out and fix it. I think he's right. I initially indulged in a dark funk of mood but could not sustain it. I feel OK now and know that I'm in good hands. I also know that there is not anything that I can do anyway. (I asked.) Next Monday I will know more and in the mean time I can be easily distracted by the current election politics.

News update

It must be time for a news update.

On the medical scene, there is no one in my family that has any medical concerns except me. Thank goodness. I was recently at Dana Farber for a routine appointment. My counts continue to be steady, with the exception of my white blood cells. The white count may have been low because of a sore throat that I was just getting over. The sore throat is now gone. I’ve been fortunate; during the seven months since the bone marrow transplant I have had only 2 minor infections. Quite lucky, really.

Two important questions that I asked while at Dana Farber were answered. The first was whether there is any foreseeable reason that I would not be able to return to teaching in the fall. I was delighted with the answer: I can go back to teaching next school year. The second question was about orthopedic surgery. I hoped to start the knee replacement process soon, March or April. The answer to that question was disappointing. Spring is too soon for surgery, but we’ll keep evaluating the question of timing the surgery. Too bad. An early start with the orthopedic fun and games would have meant a more relaxed (longer) period of recovery and rehabilitation before starting back to school.

I feel well and strong most of the time. There is the occasional day when I feel like I need a lot of sleep, what I consider a ridiculous amount of sleep. I feel good afterward and my schedule certainly allows for as much sleep as I want (or any other activity that I want for that matter.) I’ve been getting a fair amount of use out of my exercise equipment. I have an exercise bike that I use about 30 minutes a day and a rowing machine that I am using more each day. (That is a work out!)

The rest of the family is busy with their routines. Barbara is working more hours (I certainly don’t need much nursing any more.) Things at the church are their normal busy way. David is back at George Washington University enjoying living like a king in DC. He and some friends rented a townhouse for the spring semester rather than living in university dorms. He is very happy with his new palace. Robert is still in Guinea finding exciting opportunities and adventures at every turn. In a couple of weeks he is off to Senegal for the international softball tournament. Who knew that such a thing took place in Senegal? I’ve been enjoying tutoring a handful of SPM students via video conference. We get together once a week for a couple of hours. The kids seem to benefit from the sessions and I like “keeping my hand in.” As long as the students find the sessions helpful we will continue.

That’s all the news that’s fit to print.

News of Robert and David

Happy New Year! Best wishes to you for a good new year filled with hope and blessings.

I promised, as I ended my last post, that I would give an update on the news of our sons, Robert and David. First, however, I’ll give a brief accounting of my medical news. My recovery is still going along slowly but moving in the right direction. It’s been 3 months now since I’ve needed a transfusion and my blood counts are steady and slowly inching without the help of any boosters for white blood cells or red blood cells. Another aspect that shows some progress is that I am now being scheduled for appointments at Dana Farber every 4 weeks. Until recently I’d been going weekly. I feel strong most of the time and have managed to avoid catching a cold or flu (always a concern.) I’ve been getting decent exercise shoveling snow, a great upper body workout. To keep my legs limber and strong I’ve been peddling along on my exercise bike (not as satisfying as snow removal though.)

David is now home. He returned from studies at the Corvinus University in Budapest, Hungary. He was there for a semester learning about Hungarian language, art, literature, economics and politics. Budapest is a beautiful city and he had fun exploring it both on his own and with his classes at the University. He has acquired a little skill in speaking Hungarian but only a little. It is a hard language to pick up and not much like English in structure. He lived in an apartment with 2 other students in the program for international students. The apartment was in a good location downtown where he had easy access to public transportation and shopping and cafes. Dave enjoyed the hot mineral baths for which the city is famous and toured the museums as well. One sad event of his stay was that his apartment was broken into and his camera and laptop were stolen. This occurred in mid-November, making the remainder of his school work a bit less convenient, he had to go to the University’s computer lab to write his papers etc. The greater loss was the digital images he’s already taken and that he couldn’t take any more. An important record of his stay there was lost along with the laptop’s hard drive.

Dave was able to visit other places in Europe. During his 4 months abroad he went to Munich, Prague, Vienna, Amsterdam, Transylvania and Slovenia. David wrote about his trip to Munich,

“ So I'm safely back from Oktoberfest, and it was a lot of fun. Myself, ryan(my roomate), andrew and chris went up in a night train that left about 930 and after 10 hours got in around 7:30 in the morning in Munich. We took a metro ride to Andrew's family friends which turned out to be a very friendly, very wealthy german family that lives in a nice suburb of Munich. It was some of the first home/family hospitality I had seen in a long while so it was very nice to be sat down and fed a great german breakfast (they have very good bread). They also had some of the best practical gadgets for cooking and such. They had an industrial bread slicer mounted into the center of their kitchen and had a tea maker that was shaped in a half dome with the pot resting on a ring with a candle mounted just to heat the very bottom of the tea holder. So german. So after we had breakfast there we went to Munich and to Oktoberfest. It was raining and pretty cold out but it we managed to get a seat within one of the massive tents. The beer that I was drinking at one tent has been brewed since 1397. The day was very fun and then saturday when we went back and all of the tents were filled by 8 am(we arrived at around 10 thinking we'd be sort of early) we managed to make friends with Italians and sit outside on a table, when it was a beautiful day out. So the weather fit perfectly to how our days had gone. I met up with Greg and Sawyer on satuday and spent the day with them and my friends from Budapest. It was a very tiring weekend and I got home around 11 o'clock sunday night. Things are well here, the weather is still very nice out, and I think I'm going to go Margaret Island after my next class for a few hours.”

The term abroad was a terrific experience for David and upon returning home on Christmas eve he talked about how nice it felt to be home and that he felt ready to conclude his travels, for now.

Robert will not be home from West Africa till sometime next summer or early Fall. He re-upped with the Peace Corps signing on for another year of teaching in Guinea. He was assigned to a different village for this trip. In his previous village he was on the ocean and benefited from the sea breeze. He said that village, Kanfarande, was one of the most beautiful places he’d ever seen. His new village, Bintimodia, is farther inland so a bit hotter but it does have some advantages. His current lodging is a proper house, not a thatched hut, his new school has smaller classes and better students. He can use a cell phone from his new village (though he barely catches the edge of a cell.) He is now a short bike ride (1.5. hours) from a place where he can get on the internet and swim in a pool, yes, that is a big deal. Robert wrote of his new home,

“My new home is a veritable mansion, I used to live in a one room hut with a thatch roof, and I have moved up in the world quite a bit. I have tiled floors, three bedrooms, two bathrooms with actual porcelain toilets (not pretty mind you, but no squatting involved), a large living room, and a great porch where I have strung my hammock. I of course still do not have electricity or running water, and cell phone coverage exists only under a specific mango tree (hilarious, no?) and down at the river.
I am no longer a physics teacher as I was in Kanfarande, but now am the math teacher for the 9th and 10th grades at the school in Bintimodia. Learning the new curriculum was something of a challenge, and I am now teaching a whopping 18 hours per week (a full 30% increase over my prior workload). It is less difficult in some regards than teaching a highly conceptual subject like physical science. I have the opportunity to work with concrete numbers and examples, repetition and practice are the mainstays of my courses. My 200 some odd students number about half of what they were at the old site, and as they are the older students, they have proven to be less difficult to control, a welcome relief.”

We are very proud of both of our boys and their interactions with the wider world. Theirs make my young adult life seems so plain and pale.