health

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Embracing

The Embrace and the 1965 Freedom Plaza by artist Hank Willis Thomas and MASS Design Group on the Boston Common

The Embrace is a bronze figural abstraction based on a photo of an embrace between Dr. Martin Luther King, Jr. and Coretta Scott King after he won the Nobel Peace Prize in 1964. The 20-foot-tall, 25-foot-wide artwork differs from the singular, heroic form of many memorials to Dr. King and others, instead emphasizing the power of collective action, the role of women as leaders, and the forging of new bonds of solidarity out of mutual empathy and vulnerability. The Embrace is an unprecedented attempt to give shape and prominence to Dr. King’s conception of agape love. It is also intended to reflect Coretta Scott King’s faith in the power of art, and her long life of struggle against militarism, poverty, discrimination, racism, and sexism.

City of Boston

One compensation for the many trips to Boston for cancer treatment has been the opportunity to visit people and places we might otherwise have not seen. On the last trip we had a pleasant walk through the Boston Common and Public Garden, highlighted by The Embrace.

It’s a moving sculpture, both in the sense of being emotionally significant and in the sense of conveying a feeling of life in motion. It’s a testament to the King Family, the Civil Rights movement, and what Boston hopes to become.

I’ve felt an embrace from the people around me during this cancer journey, especially from Susan, who’s had a harder time of it than I have. (I’ve slept through much of it.)

She said in one message to friends and family:

He’s grateful for all your concern and messages. He can’t easily respond to your messages, but we’d love to hear from you.

That was very true. I’ve felt support from everyone.

And of course, I can’t say enough about the many health providers at Dana-Farber, Outer Cape Health Services, Cape Cod Hospital, and more. In an era when public health is deteriorating rapidly, I’ve been fortunate to receive the best care in the world.

[This article is cross-posted on my semi-private cancer blog, Surviving Lymphoma. Login with your own WordPress account to request access, or write to me for a login and password.]

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How quickly do cells grow?

I don’t ordinarily spend a lot of time thinking about how quickly the cells in my body grow. But one of the many benefits of cancer Is that it’s giving me an insight into that question. I’m now learning a bit about this and particularly about how it affects every aspect of the cancer and chemo treatment.

Detection

Many cancers are detected in the first place because the cancer cells grow so much faster than the surrounding cells. For example, a skin cancer might show up as a spot or lesion on the skin that enlarges much faster. Other cancers show up as launch center of the skin or processes that interfere with normal body function.

In my case (ALCL) I did not detect cancer in this way. The cancer cells were in fact growing much more quickly than ordinary cells but that was all happening internally, in the abdominal lymph nodes.

Diagnosis

A key part of my cancer diagnosis was a PET scan. This is an imaging test done using hybrid PET/CT cameras. It uses 18F-sodium fluoride as a marker. This radioactive substance lights up the most quickly growing cells. In my case this showed brightly lit abdominal lymph nodes. There was also some involvement of bone marrow and spleen, indicating possible cancer cells growing quickly, but not as quickly as in the lymph nodes.

Treatment

The actual chemo treatment also depends on differential cell growth rates. The cytotoxins kill the most actively growing cells (the cancer), but fewer of the regular body cells. The theory is that one can keep zapping the cancer without doing irreparable harm to the rest of the body.

Side Effects

The most obvious effect of differential cell growth rates is in the side effects of the chemo therapy. For example, I lost the dark hair on my head but not the white hairs. This is good in the sense that I’m not completely bald, but it also shows that the cells that generate the dark hairs on my head are more alive (growing faster) than the cells that generate the white hairs.

I’ve also lost some of the hair under my arms but very little of the hair growing on the tops of my arms. One of the worst effects is in my mouth. The cells in the lips, gums, tongue, and interior of the mouth are rapidly growing cells that are affected more severely by the chemotherapy than are other cells in the body.

More

A good, accessible resource on cell growth is Cell Biology by the Numbers by Ron Milo and Rob Phillips. Their chart makes clear why chemo affects the digestive system, blood cells, and mouth cells more than say, fat or skeletal cells.

They point out that hair grows at about 1 cm per month, while fingernails grow at about 0.3 cm per month. Coincidentally, that is about the same speed as the continental spreading in plate tectonics that increases the distance between North America and Europe.

That last factoid should come in handy someday; I’m just not sure when.

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A TRIPS waiver to stop COVID-19

As you may know, a major barrier delaying international distribution of COVID-19 vaccines is intellectual property restrictions. Biden could remove that barrier by supporting a TRIPS Waiver.

Such a move is supported by many organizations such as Oxfam, Medicins san Frontieres, and Human Rights Watch. Without it, the pandemic will continue, quite likely increasing, and new lethal variants are certain to arise.

A TRIPS waiver is important to save perhaps millions of lives worldwide, but also for bringing the pandemic under control in the US.

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Walking the Cape Cod Rail Trail

Cape Cod Rail Trail

Cape Cod Rail Trail

Shortly after dawn on Sunday, Daniel Dejean and I set out to walk the Cape Cod Rail Trail (CCRT), not just to walk on the trail, but to go the entire 22.3 miles.

I like to walk long distances at a brisk pace, but I was worried about going with an accomplished marathoner, one who would probably be bored with my pedestrian pace. But Daniel seemed quite happy to walk instead of run.

In the beginning we had the trail to ourselves. Perhaps others were deterred by the hour or the temperature just below freezing? In any case, it was heavenly. We enjoyed the exercise, the views, and the conversation. For equipment, we took along one not-smart phone and a fancy watch that didn’t work.

Taccuino Sanitatis

Taccuino Sanitatis

For six hours, we saw a side of Cape Cod that you miss completely if all you know is Route 6, the beaches, or the residential streets. Since the trail is elevated, it offers a better view than that afforded by many forest trails. We saw natural wetlands and cranberry bogs, salt marshes, meadows, forest, creeks, the bay, and the back sides of houses, churches, and businesses. There’s a winery that I didn’t know about.

We talked about what we each liked and didn’t like about life on Cape Cod, music, art, movies, growing up, religion, Borges, Deleuze, Piaget, and OULIPO. We also had good stretches of silence, just listening to the birds and the wind, or walking without listening at all. Amazingly, we avoided the political discussions that seem to dominate the ordinary day.

A long walk imbues your body with a rhythm that offers peace and balance. We joked about Daniel’s fancy electronic watch, which told us all kinds of things, but seemed incapable of  communicating the time of day. We saw it as very postmodern, or perhaps Buddhist, in its rejection of our chopped up daily lives.

Setting out

Setting out

Our overall pace was 3.6 mph. That’s faster than Google walks, but still fairly relaxed. Around 17 miles we each began to feel the stress on our bodies. Daniel revealed that he feels the stress at the same point when running a marathon. It’s interesting that it occurs at the same distance, but of course half the time when running.

As the sun rose, we began to see more people. There were people walking their four-legged masters, babies in strollers, people in wheelchairs, couples, groups, and solitary walkers. Each of them were experiencing a slice of Cape Cod that is hard to find in any other way.

I don’t know that any of them planned to walk the entire route as we did, but I’m sure they each felt some degree of balance as articulated by Taccuino Sanitatis. This is an 11C Arab medical treatise by Ibn Butlan of Baghdad which sets forth the essential elements for well-being, including balance of activity and rest, food, fresh air, and state of mind. Daniel pointed me to that.

Before the railroad came, Cape Cod was accessible only by boat or stagecoach. Passenger rail service from Boston to Provincetown started in 1873 and became a major factor in the Cape’s growth as a summer resort area. But when the car bridge over Cape Cod Canal opened in 1935, passenger rail service soon came to an end. The cars were a boon for tourists and tourist services, but they also began to destroy much of what makes the Cape so special. Residents and visitors who see the Cape mostly from their cars or selected recreational areas miss a lot.

The rail corridor was purchased by the Commonwealth in 1976. A portion of that was converted to a rail trail, which now runs from South Dennis to Wellfleet with side trails going off to Chatham and other areas. Daniel’s uncommunicative watch told us that the trail on the rail bed was a way to step back in time, to connect to some of that earlier Cape Cod life, and to experience a more balanced way of life.

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Double hernia repair

Enjoying Northern Lights (about a true-life, foolhardy adventure) prior to surgery

Enjoying Northern Lights (about a true-life, foolhardy adventure) prior to surgery

This post is just a place to record some notes (newest first) regarding medications, symptoms and such related to my recent surgery, which my drug-addled brain might easily forget.

It has more detail than anyone wants, but I thought it might be useful for the post-op visit, for immediate family, and for me to monitor what I hope will be progress. The bottom line is that so far it’s going better than I expected.

July 4 (day 4)

Some dizziness and fatigue. Bruises showing more.

Exercise today: 12K steps, 34 floors

July 3 (day 3)

Feeling much better–lost most of fluid buildup, defecated, now less than pre-surgery weight, incisions healing well.

Considering the Wellfleet 5 mile Road Race, but wiser heads may prevail.

Exercise today: 9K steps, 31 floors

July 2 (day 2)

Removed bandages and showered this morning. It’s still sore at the incision sites and internally, where I’m assuming the mesh is, but mostly just when I bend. Still about 5.5 pounds over pre-surgery weight.

Having some side effects from the oxycodone (shaking, constipation); stopping that now.

Exercise today: 8K steps, 23 floors

July 1 (1st full day after surgery)

The pain still seems minor, more like high discomfort. So, I’m taking just one oxycodone at a time, roughly every four hours.

It hurts a bit more after a longish walk. The biggest problem is bending over, say, to tie shoes. The admonition to avoid lifting heavy objects is unnecessary, since there’s no way I’d attempt such a foolish thing.

The minor pains from last night (urination, throat, incision) seem mostly gone.

People who make standup desks ought to add serving hernia patients to their list of advantages.

Exercise today: 8K steps, 21 floors

CCH-banner

Cape Cod Hospital in Hyannis

June 30 (day of surgery)

I had bilateral laparoscopic inguinal hernia repair at 1:30 pm on June 30, 2016. Dr. Carlos Fonts was the surgeon. It was done in the O’Keeffe Surgical Pavilion at Cape Cod Hospital, which conveniently opened the year we moved to Cape Cod.

I have to add that I feel very fortunate with the surgeon and all the staff in his office at CC Hospital. They were very professional and courteous. When I said that all I wanted to drink after surgery was some water, a nurse from Morocco made me a “special” cocktail of fruit juices, which was delicious.

I recovered fine from surgery around 4 pm, without the embarrassing regurgitation I had after a previous surgery. My main complaint is a sore throat from the breathing tube. Later I discover some bleeding and minor pain around the naval incision and stinging urination.

There is also bloating. When I weighed myself the morning of surgery I was 217.7. The night after, having eaten modestly, I was 227.7 (a 10 pound increase).

Around 11 pm, I have my first sensation of pain at the sight of the repair, internally. Overall the pain is minor, so I took only two of the oxycodones today (6 pm, 11:30 pm).

It seems OK to walk, but difficult to bend over.

Exercise today: 1 K steps, 7 floors

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Recognizing Roma

Akdeniz University project

Akdeniz University project, grades 5-7

A remarkable, but little noticed event was reported on April 7 in the NY Times (with limited coverage elsewhere). Rick Gladstone’s, ‘Roma poisoned at U.N. camps in Kosovo may get apology and compensation‘ relates the findings of a human rights advisory panel of the United Nations Interim Administration Mission in Kosovo. The panel found that the mission failed to protect Roma families sent to camps after war broke out in 1998 between Serbia and Albanian separatists.

Hundreds of Roma were placed in three camps in Mitrovica, Kosovo, after ethnic Albanians had seized their homes. The camps were within 200 yards of enormous piles of industrial waste from a lead-smelting factory. Soon after the camps were set up, many Roma died from lead poisoning. Others suffered stunted growth, irreversible brain and nerve damage, suppression of the immune system, anemia and renal failure. There were associated speech, language, and behavioral problems. Some of this is described in the film Gypsy Blood: The Roma, Ashkali, and Egyptian IDPs of Mitrovica, Kosovo (2005).

Turgut Reis school

Turgut Reis school

The panel’s findings are significant in two ways. First, the U.N. rarely apologizes for anything, often denying allegations or asserting diplomatic immunity. Forced to enter difficult situations with limited resources, it is understandable that mistakes can be made. But even as the organization of last resort, it is important for it to acknowledge errors and where possible provide remedies. That’s a necessary first step before encouraging member countries to do likewise.

Perhaps more significantly, the finding recognizes a harm done to Roma people, one in a long series over many centuries. During the Second World War, the Nazis exterminated hundreds of thousands of Roma. This was the Baro Porrajmos, or Great Devouring. After the war Roma experienced killings, forced sterilization, segregation, racial discrimination, evictions, and extreme poverty.

Roma are widely misunderstood. People who would never say something similar about other groups often casually offer ignorant and offensive comments about Roma people. They are seen by many as rootless (“gypsies”). It’s true that they are widely dispersed, but most are settled, or would choose to be if they could find work. They are seen as unwilling to participate, even though as with any group, some assimilate well to dominant lifestyles while others maintain distinctive ways. It’s a final insult that they are widely blamed for petty crimes with little evidence other than an often mistaken ethnic identification. (And yes, they do commit some crimes, just as do members of any group.)

My own experience with Roma people has been limited. There were Roma in Illinois, especially in the southern areas. I met Roma people during a year in Ireland. Amongst a large number of immigrants, they were often misidentified based on quick judgements about behavior. I’ve met Roma in the US and in various other countries in Europe. I learned about librarians in Bucharest working with Roma communities. I visited “Roma schools” in Turkey. I wouldn’t pretend to any great personal knowledge, but what I have experienced loudly confirms what I’ve read from thoughtful sources, e.g., The Roma and open society or Dimitrina Petrova’s ‘The Roma: Between a myth and the future.’

To take just one example: The Turgut Reis middle school in Çanakkale, Turkey (see photos above) is set in the midst of a 600-year old Roma community. To residents of the neighborhood, the Turks, Arabs, Europeans, and so on are the itinerant ones. Students in the school are bright, energetic, focused on sports, music, and each other They’re sometimes unruly, but fun to be with. They fit well to my stereotype of middle school students .

The needs of the Turgut Reis community are familiar in other urban settings–job opportunity, education, affordable housing, and overcoming racism. The history of the people undoubtedly shapes their situation today, but that situation is not determined by being Roma. Attaching a label, such as “Roma,” may provide a starting point for conversation, but it ultimately tells us little about any individual.

I’m glad that the U.N. panel found a failure to comply with the applicable human rights standards in the Kosovo camps. It also urged a public apology and payment of adequate compensation. I hope that doing so nurtures the growth of a greater understanding of a complex and fascinating culture.

 

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Scleral lenses

Scleral and corneal RGP lenses

Scleral and corneal RGP lenses

It’s not a serious health problem, but it has been annoying. About eight months ago I injured my left cornea, down to the limbal stem layer, which ordinarily can regenerate the rest. It was slow to heal because of a variety of conditions whose very existence or the treatment of interacted in unfortunate ways.1

There was a little pain, poor vision, and light sensitivity. I couldn’t wear the contact lenses that were the only way to correct my vision and had trouble finding a glaucoma treatment that my eye could tolerate. During this time, I had many appointments with various specialists, and tried a variety of topical medications and an oral one that made me ill.

Scleral lens in my eye

Scleral lens in my eye

But now, a solution is in sight. Despite some last-minute delays, including one caused by the Blizzard of 2015, I just got a scleral lens for each eye. My lenses are new, so it’s too early to say for sure, but my eyes already feel better than they did with ordinary contacts or nothing at all. And I can see again.

A scleral lens is a large contact lens that rests on the sclera, the white portion of the eye, rather than on the cornea. The lenses bulge outward, creating a tear-filled vault which protects the cornea and allows it to heal. You can see in the photo how it compares to the regular gas permeable (hard) contacts I had been using. Prototype scleral lenses were made in the late 1800’s. Lenses would be shaped to conform to a mold of the eye. But without oxygen permeability they weren’t very practical. The modern lenses are made possible by the development of a highly oxygen permeable polymer for the lens itself and digital imaging techniques (including optical coherence tomography) to record the shape of the eye’s surface. That information allows creation of a virtual 3D scleral lens design.

Because the lenses are rigid and fluid-filled the correction can be better than with glasses or various kinds of contact lenses. That fluid, and the fact that the lenses don’t touch the cornea, means that they feel better and can help the cornea to heal. I’ll have to allow some time to see whether those promises hold true. There’s also some work involved in learning how to insert and remove the lenses.

Sclera lenses

Sclera lenses

A scleral lens is not the same as a sclera lens (see left). Either might invite thoughts of extraterrestrials.

Notes

(1) Keratoconus, glaucoma, dry eye, astigmatism, etc.

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Walker trail

Map of WCT lands

Map of WCT lands

Wellfleet Conservation Trust logo

Wellfleet Conservation Trust logo

The Wellfleet Conservation Trust has been very active recently, securing land for conservation, guiding walks, and building trails for anyone to enjoy. Their website gives a good idea of their many projects. As you can see from the map on that site, the WCT land complements that of several other organizations, making a wide variety of environments available for protection of plant and animal life and preservation of the fragile land, as well as helping the people have healthier lives in every sense of that word.

Walker trail pond

Walker trail pond

I was fortunate to get to assist with some of the trail clearing, including at the recently established Walker trail. The site is nearby, one that we can visit on the way to swim in local ponds or after a trip to the transfer station.

The trail minus foliage

The trail minus foliage

The trail runs through land donated by the Walker family. It’s short, but surprisingly varied, with some ups and downs, views of a few houses, and a small pond. Making the trail included installing some benches and rustic steps for the steeper portions. There was also a major project to remove a large dead branch that was hanging over the trail. Members of the WCT, young workers from the two Wellfleet residences for the AmeriCorps Cape Cod program, and other volunteers all contributed to the effort.

Hung branches

Hung branches

The WCT mission is “to assist and promote the preservation of open spaces and natural resources and to protect the rural character of the town of Wellfleet…The Trust acquires land by gift or purchase…develops walking trails and encourages the study and implementation of sound environmental practices.”

Start of trail

Start of trail

Click on any of the photos to enlarge them.

WCT bench

WCT bench

Log steps

Log steps

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Islamic Science and Technology Historical Museum

Yalikavak, Turkey

Our last stop in Istanbul was at the İstanbul Islâm Bilim ve Teknologi Tarihi Müzesi (Museum for the History of Science and Technology in Islam) in the Eminönü district. It’s a wonderful museum, displaying centuries of achievements in geography, navigation, astronomy, mathematics, music, optics, chemistry, chronometry, historiography, medicine, military, civil engineering, and other disciplines.

I was told in school that the period when most of these discoveries and creations occurred (9th-16th century CE) was called the Dark Ages, a time of fear, superstition, lack of progress, even regression from the Classical era. Then the Classical learning was miraculously rediscovered and expanded during the Renaissance. And of course, like many things I learned in school, it was partly true.

But the fact is that while great scientific and technical accomplishments were happening in the Islamic world, much of Christian Europe languished in these areas, not completely, but to a large extent in comparison. Islamic scholars maintained and extended the Classical learning, and incorporated additional ideas from Greek, Byzantine, Indian, Judaic, and other traditions. They not only advanced learning considerably, but did so by listening to and learning from other cultures.

Long before Roger Bacon, they articulated and promoted experimental science, and they wrote about inductive or scientific methods long before Francis Bacon. They studied the circulation of blood before William Harvey, and made many other medical advances. But the exhibits do not take a “who did it first?” approach; instead, they emphasize the continuity of learning, across time and across cultures.

The Ages were not Dark everywhere, and the Renaissance in Europe was not autonomous; it was dependent upon and grew organically from an Islamic culture that valued learning in all its forms.

The Museum displays fascinating astrolabes, glassware, maps, globes, medical instruments, ships, an elephant clock, and many other artifacts. I’ve never seen such an assemblage anywhere, and these are beautifully presented and explained with multilingual text and video. Scientists, mathematicians and other scholars, such as Muhammad ibn Mūsā al-Khwārizmī, Ibn Sena (Avicenna), Geber, Al-Jazari are featured.

That’s why it was both surprising and a bit depressing to see how few people came to the exhibits. I counted five total visitors during the entire time that we were there, Make that seven if I include Susan and me. There were about fifteen staff and guards. Of course, it’s been open only two years.

İstanbul offers tough competition for any museum. World Heritage sites like the Topkapi Palace nearby, the Sultanahmet Cami (Blue Mosque), and Hagia Sophia are just a few of those within easy walking distance, each offering jaw-dropping sights. But those also offer long lines and crowded viewing. It’s difficult to fully appreciate the Topkapi dagger while being shoved along in a crowd. The Museum for the History of Science and Technology in Islam offers a different and equally important view of Islamic culture, one that I suspect is not well known by many within or outside of Islam,

The Museum is housed in the Has Ahırlar (Imperial Stables) complex now in Gülhane Park. This area was once the outer garden for the Topkapı Palace during the days of the Ottoman Empire.

The working instruments and other objects were constructed by the Institute for the History of Arabic-Islamic Science at the Johann Wolfgang Goethe University, Frankfurt, based on illustrations and descriptions in textual sources, and to some extent, on surviving original artifacts. There is a similar exhibit there under the direction of Fuat Sezgin. The İstanbul museum is a joint project of the Ministry of Culture and Tourism, the Scientific and Technological Research Council of Turkey (TÜBİTAK), the Turkish Academy of Sciences (TÜBA), the İstanbul Metropolitan Municipality, and Goethe University.

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Will there at last be a public option for health care?

Finally, the Democrats are stepping up to offer a real alternative to the Republican’s do-nothing approach and their own save-the-insurance-companies approach.

On March 9, Congressman Alan Grayson, D-Fla., introduced a bill (H.R. 4789 — the Public Option Act, or the Medicare You Can Buy Into Act) which would make it possible for any US citizen or permanent resident to buy into Medicare.

Grayson said,

Obviously, America wants and needs more competition in health coverage, and a public option offers that. But it’s just as important that we offer people not just another choice, but another kind of choice. A lot of people don’t want to be at the mercy of greedy insurance companies that will make money by denying them the care that they need to stay healthy, or to stay alive. We deserve to have a real alternative.”

The bill would require the Secretary of Health and Human Services to establish enrollment periods, coverage guidelines, and premiums for the program. Because premiums would be equal to cost, the program would pay for itself.

“The government spent billions of dollars creating a Medicare network of providers that is only open to one-eighth of the population. That’s like saying, ‘Only people 65 and over can use federal highways.’ It is a waste of a very valuable resource and it is not fair. This idea is simple, it makes sense, and it deserves an up-or-down vote,” Congressman Grayson said.

I signed the petition calling for at least a vote on Grayson’s proposal. If you agree, sign it too and to urge Speaker Pelosi to allow that vote.