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

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 (pomalidomide) and dexamethasone (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 (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.
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Hi Stephen, Thanks for the update. I think you have a great attitude towards your illness, not letting it take over your whole life, so to speak! Good luck with the new treatments too.
Was in Vancouver BC last weekend, where spring is more advanced than here. The spring bulbs are in bloom and the cherry trees too! As far as birds go, saw mallards, Canada geese, red winged blackbirds, and of course lots of seagulls. At home we can hear the chickadees, see the magpies and even noticed three flickers (sort of woodpecker) a couple of weeks ago.
And lately, have seen a bobcat (not a lynx after all), a squirrel and a coyote in my garden...it's fun to watch nature I agree!
I am sure that your friends, who no doubt keep track of what is happening with your health, like a variety of topics to discuss also!
I have Google alerts that bring these articles to my attention. As one who is doing very well recently, I thought "I'm not reading this today". But then I decided to peak anyway. Glad I did. Nice article! Light yet enlightening (trademark? eh)
My most obvious sign of being sick is the fact my vocal cords don't work. Some patients deal with pain, illness etc, I deal with not being able to talk. No way to explain the frustration/anger etc about that one. (I can't explain cuz I can't talk - ha).
But my best line is when people I don't know ask me why I'm whispering, I whisper back "it's a secret". 100% chance of getting a laugh at that one and it kills several birds with one stone.
And "Becoming that Guy". Isn't that huge? In my first disclosure to friends and family, I mentioned several times the fact that "I had become THAT guy". For me, that has been the most difficult emotional aspect of this thing. From active, healthy, jovial Dad, to...That Guy. uggg. People feeling sorry for me has been the worst part of this so far.
Luckily I'm a farmer and everyone wants to talk (whisper) about farming. No ice needs to be broken on that topic since everybody has some idea of what affects farmers ... water, rain, wind, etc, etc, and people love to talk about it, as do I.
One question Stephen ... What's up with those Trade Towers anyway? Are they being built? I love current events too, but us west coasters aren't kept up to date on the towers anymore. Would this spring be a good time to take kids out to NY? If we do go out, we are bringing our own extra large cups!
Thanks for the nice article. Stann
Stephen,
I enjoyed the tour from the health difficulties faced, to the walk in Central Park, bird watching notes, and a positive look to the future. Your writing reflects honesty without tragedy. A wonderful essay.
A gift of this myeloma lifestyle is, as you mention, an increase in reading time. If you haven't read "In The Garden Of The Beasts" by Erik Larsen, I highly recommend it for its historical significance and readability.
Best,
Stephen
DX 2003
Thanks Nancy and Stephen for those comments, and for the book recommendation (I've been reading all of Alan Furst's novels, which take place in Eastern Europe in the late 30's/early 40's). Stann -- I have had a little trouble speaking from time to time too, from thrush, a possible side-effect of a steroid inhaler I was given to deal with the asthma/pneumonia. Some ghastly tasting mouthwash took care of it; I'd check in with your doc! As for the Twin Towers, the City and State decided to spread the "square footage" of the floors of the former twin towers (6 blocks south of where we have lived for 30 years) among several different building. The largest one is One World Trade Center, on the western edge of the 7 acre site, was "topped off" at 105 stories last August and a giant antenna is now being erected on top of it. Several other large buildings on the eastern side of the site. A pretty good photo from the west (probably from New Jersey) can be found at http://www.app.com/article/20120830/NJNEWS/308300075/One-World-Trade-Center-steel-skeleton-completed. The site was flooded during Hurricane Sandy in October, but construction resumed pretty quickly.
Hi Stephen, I enjoyed reading your column. I liked reading about your bird observations. In my back yard, I have set up pretty much a bird feeding center. My family and I love to watch all sorts of birds (and those little squirrel rascals) munching happily for hours. We were even visited by a pair of wild turkeys last fall....we live only a few miles from Philly, so that was a treat. Also, if you have problems with thrush, try drinking a glass of kefir daily. It should wipe out the thrush in a few weeks. It is loaded with probiotics. You can make your own or buy a good brand like Lifeway. I drink a small glass a day and I think it makes a difference in my overall health. Good luck. Terry L.
Love this column. I find myself doing the same thing: let's not dwell on me and my situation, let's talk about all the other great things going on out there--family, books, music, etc.
This was a really good first-thing-in-the-morning read!
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