Leroy's Art Blog

It has felt odd this month in Seattle. Pretty much like the vacation that it really is, but at the same time it is as much “home” as anything else I can claim right now. So, while enjoying the time with family and a side trip toPortland to visit Tanzania Peace Corps friends, I have also been working to line up medical insurance and following Craigslist to see what kind of initial living quarters might be available in Philadelphia, come September.

Kent and Deena, in Portland, OR

Kent and Deena have a beautiful house in Portland, and spend a lot of time gardening. So their immaculate house is surrounded by flowers, vegetables and beautiful green things. This seems to be typical of Portland, where many homes have extensive landscaping or gardens around them.







We spent a day playing along the Oregon Coast, characterized by huge rocks standing just offshore, like sentinels. A lot of them are pierced by holes or tunnels - seems like a strange geological feature.

I wasn’t their only guest. Steffanie Meyer was there too. Steffanie had been stationed close to Kent and Deena, but I hadn't spent much time with her in Tanzania. It was delightful to get to know her better, and of course sharing Peace Corps stories was great fun. Steffanie is studying for an advanced degree at the U. of North Carolina in Chapel Hill, and will be doing her thesis work back in Tanzania. She is even making money based on her Kiswahili, as she will be a teaching assistant for a language course during the school year.

We did a lot of hiking, along the Oregon coast and the Columbia River Gorge. The Gorge is spectacular - broad, with high cliffs on both sides and lots of high waterfalls. We hit one trail along the Gorge though that I found to be a killer. Beautiful, but about two hours of climbing sharply with no real breaks in the terrain. I hated it that I had trouble catching my breath during the climb, and had to stop repeatedly to rest. I can’t delude myself anymore, I really am becoming symptomatic from my lymphoma. Two months ago, in Guatemala, I could have handled that hike much more easily, even at 9000 ft. So I will have to take it easy this next month while touring Glacier and Yellowstone Nat’l Parks with my family, and be prepared to stay in the base camp and read while my clan strikes out for the more difficult trails. And when I arrive in Philadelphia in September, I will have to get cracking right away to set up a medical team to work with.

Apart from all this good friendship and warm family events, I also got the good news is that my Workman’s Compensation claim has been accepted, so the expenses of treatment should be taken care of now, even without requiring a co-pay.

The happy four of us, on the trail. And now, Matt and Paola arrive tomorrow night from China (Thursday), Roy and Alice return from summer camp on Saturday, and then we head out for Montana. What a summer!

A family tussle in Ellen's apartment in Seattle. Diane, Roy, Alice, me and Ellen. The picture behind us is a favorite of mine. The statue growing out of Ellen's head was a gift from Matt, a ceramic celebrating the Chinese opera The East is Red







I’ve been in Seattle for a week, and it has been good. Roy and Alice are delightful kids, independent, curious, energetic, friendly and trusting. They have been going to an Akiedo class every morning, and earned their “yellow belts” by the end of the week. We spent a lot of time swimming at Madison Beach, and just hanging out together.

Ellen has some six paintings on display at Liberty, a gallery-restaurant here in Seattle, and one of them has already sold. Another was the cover of the Seattle Stranger this past week – it was always a pleasant surprise to see her strong painting in the street newsboxes.

And this feels like I am writing an itinerary – nothing of interest to beyond the very good feeling it gives me in my gut to be together with my family and feel their concern and love. But this is such a change from June, which was a tough month alone in Washington with all that ominous medical testing followed by the ultimate evil diagnosis and the changes it forces into my life and my planning for the future. Maybe the important thing is simply that this past week has been such a break from all that.

Still, I am reading the informational booklets from the Int’l Waldenstrom’s Macroglobulinemia Foundation now and then, trying to understand more fully just what has gone flooey in my immune system and how the experts think treatments actually function. It gets into the process by which plasma cells are created in the bone marrow, and that turns out to be a very complicated sequence indeed.

I can’t get my hands around this disease. They say that the timing when treatment is started does not make any difference in the survival rate. OK, that is clear enough, as the treatments are palliative, not a cure. But the argument for delaying treatment (chemotherapy) is that the response to successive treatments tends to decrease. Therefore holding off as long as possible may maximize the chemo effectiveness over time. But some treatments, in some people, does seem to provide complete remission. Yet, the medical comments are that even this is not a “cure” and it is not certain that even this “complete remission” prolongs life in any way. This just doesn’t make sense to me.

Meanwhile, it continues to be a wonderful break, here in Seattle. Right now it is 68 degrees and sunny, headed for a high of 79 today. And I am so looking forward to visiting Deena and Kent (PC buddies from Tanzania) in Portland later this week, and to camping in Glacier and Yellowstone National Parks next month with Matt, Paola, Roy and Alice!

There is a lump in my throat this morning as I pack up to leave Washington, with my plans and hopes for the future now in disarray. I wrote a message to the Mexico Desk of the Peace Corps yesterday, explaining that for medical reasons I am no longer a candidate for service there thsi fall. It was tough to write. I got an immediate reply wishing me well, and offering to reinstate my application immediately if my medical condition should stabilize in the future.

For all that, I am looking forward to arriving in Seattle this evening, and to seeing Ellen in the airport. It will be a great time there, surrounded by family. And this morning I will be able to attend the Washington Live Earth Concert on the Mall, and maybe even have a little time to enjoy the Smythsonian Folklife Festival on the Mall before leaving for the airport.

Not a bad way to leave Washington, considering.

I don't think you can beat the 4th of July for the experience of what is best about our beloved country. This was a magnificent day here in Washington, and crammed full of Americana. I loved the parade, with the snappy high school bands from all over the USA. I was surprised to find myself getting all teary with the bands playing God Bless America and America the
Beautiful, watching all the marching firemen
proud of all their fancy shiny machinery, the
dancers from Bolivia and the proud marchers from the Phillipines, Curious George floating over the crowd... This is truly a great and beautiful country, still trying to live up to its ideals, and succeeding more often than not. There is no other like it.

The Mall was full of activities, crafts and food for the Smithsonian Folklife Festival. I spent several hours, first at the Mountain Laurel Stage (thank you Virginia) enjoying incredible American mountain music, and then at another tent listening to wonderful folk music from Northern
Ireland.

The US Navy Band was presenting an extremely enjoyable concert, when it was suddenly interrupted because there was a threat of severe thunderstorms, even tornedos. Everything was stopped, and people were directed to go to Metro stations or gov't buildings for safety. I went, instead, to a museum where there were some outside tables with umbrellas and found myself at a table with several German tourists. Found that I even remembered a few words of German - that goes waaay back! It did rain for an hour or

so, but then broke well before the scheduled fireworks.

There are lots of good places to go to watch the fireworks. One of the best is the steps of the Lincoln Monument, as the fireworks are held over the Reflecting Pool, with the Washington Monument in the background. So that is where I was. To my left there was a couple from India. On my right, a woman from Norway who works with the Red Cross to develop educational courses for Human Rights. Appropriately, she was a beautiful blond. Chaperoned,
unfortunately. Her backpack had patches from
Phillipines, Indonesia, TANZANIA and the USA. She shares my love of Tanzania, and would go back there in a flash if the opportunity should come up.

I don't know, maybe being diagnosed with cancer makes one more appreciative of the really special pleasures of life, but this 4th of July certainly was one of them.

Wow, I stand corrected. Daisy Mae, unlike Mama Zuma, was definitely a blond!

OK, time for full disclosure, or at least something approaching that. I’ve said that the Peace Corps brought me to Washington for “consultations.” Been here almost a month now, living very comfortably and enjoying the city thank you Peace Corps.

That comment about coming here for consultations was not untrue, exactly, but surely was a stretch. It came about this way: My service in Guatemala was due to end in early July, and I had requested that it be moved up to the end of June in order to fly out to Seattle and spend a week with Ellen, Diane, and my Grandkids in early July. The Crisis Corps agreed to that, and so I began the routine medical testing that precedes the formal Close of Service. In the process, it turned out that some of my blood test values were a bit unusual even after a second round of testing, and the Peace Corps wanted me to have this checked out more carefully. So my trip to Washington, to be precise, was a Medical Evacuation.

I wasn’t worried. The blood tests indicated that I had anemia and so should have been feeling very fatigued and washed out. However I felt great, and had been easily holding my own on long backpacking trips in the mountains at 9000 ft. or so. Apart from a little arthritis I have been in fine shape, trusting in my good health and strength as usual.

But the medical tests here got increasingly detailed and sophisticated throughout the month, finally including CAT scans and a bone marrow biopsy. That was a bit disconcerting. Then, on June 20th I had the fateful discussion with the hematologist/oncologist. He made it clear beyond any doubt that I do indeed have a rather rare form of cancer, a lymphoma called Waldenstrom’s Macroglobulinemia. It is a cancer that progresses slowly – fortunately - but while it can be treated there is no cure for it.

Initially, I did not want to share this information. Partly, I am not looking for and do not want pity or sympathy, partly just don’t want to admit that my health and strength and longevity will be taken away from me. There are all these plans I have for the future that have been so suddenly stripped away from me. It all had been coming together so nicely.

I’ve gotten past the not sharing part. It soon became apparent that my family needs to know what I am facing and living with, and it feels important somehow that my friends also know what is front and center in my world now.

So now, what to do about this blog. I have enjoyed writing it, and I like the occasional responses that indicate that at least a few other people also find it interesting now and then. It has been a way to communicate with my family and friends. And it has forced me to think about what is happening in my life from time to time, to organize and record my thoughts, to try to fit things into a context, and I have enjoyed that exercise.

This would be a very logical time to end the blog. It began as a record of my Peace Corps experience in Tanzania, and that experience has now come to its end, not quite four years later, in Guatemala.

I don’t know, perhaps it is an opportunity to begin a new blog, dealing with this new adventure, more insular, internal and psychological. I just this morning discovered the blog entitled “My Cancer” that Larry Sievers is writing for npr.org. He is an excellent writer, and his blog is a joy to read. I could not pretend that my sometime diary entries have that kind of appeal and interest. If I were to start/continue a blog, it would again be my attempt to record my thoughts largely for myself, but in a way that is open to others.

I just don’t know.