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Manhattan Tales: Changing The Topic From My Inglorious State Of Health

By: Stephen Kramer; Published: March 28, 2013 @ 2:46 pm | Comments Disabled

So far, 2013 has been a difficult year for me — innumerable visits to the hospital for infusions, blood tests, PET scans, x-rays, consults, two bouts of pneumonia, and unending stomach distress to cap off the experience.

Using my electronic calendar, I counted 13 visits to the hospital over a five-week period, seven of which were all-day affairs.

But hallelujah for broad spectrum antibiotics, which seemed to start working within hours of taking them. And kudos too to an alert and sympathetic set of doctors and nurse practitioners who listen closely. They picked up on the pneumonias early and determined after seven weeks that my body simply was not tolerating the experi­mental monoclonal antibody treatment I had started as part of a clinical trial.

It took another week for my stomach to calm down and my strength to return, but the last 10 days have been great. On to Pomalyst [1] (pomalidomide) and dexamethasone [2] (Decadron) for the next ride!

Notwithstanding all these hospital visits and a truly traumatic encounter with the second pneumonia, I de­cided that I don’t want to become solely a professional patient. The topic of my health is just too tedious!

My friends and relatives are, of course, sympathetic and interested in how I am doing, but I very much don’t want to be remembered primarily as a guy who tolerated his suffering well.

As a result, I have developed a technique that I want to recommend to others who are going through difficult periods and don’t want their health to be the main topic of discussion.

When people ask me how I am, I have three or four non-cancer related topics at hand so that I can stir the conversation away from my health. The easiest way for me is to say something to the effect “Not bad for an old man,” get a laugh, and then start to wax eloquently about one of these non-cancer related topics.

The first, and easiest, topic to talk about is my walk through Central Park over to the cancer center from the subway and the observations I make during that walk.

Every time that I am strong enough to take the subway to the hospital, I load up with my face masks and Purell and wait for an uncrowded train, usually the last car. I take a route involving a half-hour walk (at a very slow pace) around a pond in Central Park, the Harlem Meer, and through a small, gated conservatory garden.

Because of my weekly, or often twice weekly, visits to Mt. Sinai hospital, which is adjacent to 843-acre Central Park, I have for the first time since I moved to New York 40 years ago been able to carefully observe winter’s recession. Even during the depths of this year’s very lengthy winter, the small portion of the park I walk through has had its paths cleared of snow.

I am delighted in identifying a large variety of common birds.

On the pond, I see huge white mute swans, Canadian geese, smaller geese called brants, mallards, and red-breasted merganser ducks.

In the con­servatory garden, I see brilliant red cardinals, blue jays, robins, chickadees, purple finches, and the ubiq­ui­tous house sparrows and starlings.

I have even espied a peregrine falcon, which occasionally perches on top of one of the buildings overlooking the park, swooping down over the pond looking for a stray pigeon.

Becoming engaged with the incredible variety of nature in the quiet park for me is very exciting. I have found it strangely uplifting to see all this variety of life in mid-winter. And my friends are often eager to share their experiences with me – everyone is ready to talk about the weather.

My second topic which is an easy segueway away from my health is current events. I have become a vora­cious reader of the New York Times, the New Yorker, and listener to various podcasts on NPR. There always seems to be a current affairs topic that my friends are ready to leap into.

Hot New York City topics for discussion include protecting lower Manhattan and other swamped areas of the City after hurricane Sandy, the Board of Health’s proposed ban of over-size sodas, and the Mayor’s cam­paign against childhood obesity and firearms restrictions. I worked for more than half of my professional career for agencies of New York City’s municipal government, so my friends are easily moved into dis­cus­sions of local public affairs.

The third topic I frequently choose to discuss is exercise. Except when I have been too ill or too immune-suppressed, I go the gym and either swim or work out on resistance machines. Swimming has been out­lawed for a few more weeks, but my mood and my body both like regular exercise. I learned many years ago that my body (and most other people’s too) was not designed to sit behind a desk eight hours a day, and I used to lecture all the young people in my office about the importance of getting exercise.

Now I’m an advocate to my friends. Until my recent bouts with pneumonia, swimming was my most regular activity. That half hour of stressless, rhythmic swimming in the pool acted as my meditation, my treatment for my neuropathy, and as my mood elevator. I’m eager to go back and am sure that I will need to, for I resume steroids this week and I have had some trouble coping with the mood swings they have induced when I have taken them in the past few years.

Finally, I have been reading novels, histories, and biographies, usually for an hour or two a day. These have provided great topics of conversation and a great distraction for me as well.

Of course, if friends insist on discussing my health, the latest advances in myeloma treatment are a great topic to introduce these days. I have tried to teach myself just enough about monoclonal antibodies, Pomalyst, and Kyprolis [3] (carfilzomib) to sound informed and generate the excitement and optimism I feel when I read about these advances.

I know that I was not particularly happy about my transition almost three years ago from being a municipal lawyer who tried to help others solve their problems to becoming a patient who spends a good deal of his time focusing on his own problems.

But staying engaged with the world beyond the immediate topic of my health, particularly during and right after the most difficult periods, has been wonderfully uplifting. I am sure that there is only so much talking about my weary bones that my friends can tolerate.

Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here [4].

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URL to article: https://myelomabeacon.org/headline/2013/03/28/manhattan-tales-changing-the-topic-from-my-inglorious-state-of-health/

URLs in this post:

[1] Pomalyst: https://myelomabeacon.org/tag/pomalyst/

[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/

[3] Kyprolis: https://myelomabeacon.org/tag/kyprolis/

[4] here: https://myelomabeacon.org/author/stephen-kramer/

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