Manhattan Tales: Challenging The Bell-Shaped Curve

Over the last 10 weeks, I have spent four or five weeks in the hematology/oncology ward of Mt. Sinai hospital here in Manhattan.
I had reached a crisis point in my four-year battle with multiple myeloma.
The original hospitalization was for the installation of a port and administration of a treatment consisting of dexamethasone (Decadron), cyclophosphamide (Cytoxan), etoposide (VP-16), and cisplatin, commonly abbreviated as DCEP, in a last ditch effort to get my myeloma under control.
If the myeloma gets sufficiently under control with DCEP, I will have another autologous transplant and then an allogeneic (donor) transplant. My sister is a “perfect match,” and her stem cells have already been harvested and are waiting for me.
Unfortunately, during my first DCEP administration, I developed an infection – DCEP is a powerful destroyer of one’s immune system. The wonderful port that had been installed in my chest to obviate the need for an IV and twice daily blood draws through my very sad veins had to be removed and an abscess lanced on my arm.
Other complications ensued, which have kept me hospital bound for much of the past two months.
We were hoping to get me home in time for a Passover Seder, but my white cells refused to budge, so somewhat reluctantly, the staff allowed me and my family to have a Seder in one of the day rooms (with masks and gloves).
My youngest son could not attend as he had a cold. However, through the wonders of computers, he joined us through “Facetime” from a friend’s Seder just a mile away on the other side of Central Park. He even played the fiddle for us in the final songs. Last Tuesday, I joined the family Seder through the same means – a camera built in to our computers.
This extended time at the hospital gave me plenty of opportunity to contemplate about cancer care.
The hematology/oncology ward at Mt. Sinai is large and getting larger as the hospital tries to accommodate its aging patient population. The 1,100 bed hospital, which is one of a half dozen comparably sized institutions in New York City, now devotes about 70 in-patient beds to cancer patients, and the ward is often full. Fewer people are dying of heart and respiratory diseases; the aging population needs more and more cancer care on an in-patient basis.
We cancer patients are perched on the 11th floor, the top floor of one of the many Mt. Sinai hospital buildings. If you are ambulatory, you can pace the corridors and see phenomenally exciting views of upper Manhattan.
Even though I was neutropenic, I have been lucky enough to be ambulatory during most of my stay. My doctors decided it was more important that I keep up my strength by walking around with a mask rather than sitting in my hyper-clean room.
At all times of the day, you could find me walking the corridors, which extend a full block from Madison Avenue to Fifth Avenue. On the Fifth Avenue side, you can catch a glimpse of Central Park, the running paths and roads, and the billion gallon reservoir that sits between Central Park West and Fifth Avenue. The incredible skyline of Manhattan lies beyond. I was even allowed a few walks in Central Park itself, which at this time of year is just coming out of its winter slumber.
Two weeks ago, as I paced the halls with my IV bags dangling on their aluminum frame above me, I became intrigued at the size of the vast army of people who were taking care of us 70 patients in the ward.
By far the bulk of us are “geriatric,” meaning over 65 years old. I need to point out, though, that before I lost my immune system and went into isolation for a day, I did have a roommate who was in his twenties, and a few others were in their thirties and fourties. At 66, however, I am pretty near the median in age.
I was born at the beginning of the baby boom, the 15 or 16 years after 1947 when more than four million Americans were born each year. The life expectancy for each year of the baby boom can be plotted on a graph, and that the graph takes the shape of a bell-shaped curve.
The hematology/oncology ward in which I was ensconced last month is part of a vast effort of American health care providers to enlarge the shape of the bell-shaped curve ever so slightly so that more of us could die on the right hand of the curve. It’s an extraordinary and wonderful effort to keep us alive slightly longer than the shape of the curve would have predicted even 10 years ago.
The size of the army of caregivers working on our behalf is truly staggering. Registered nurses are posted outside of every room, either organizing chemotherapy regimens or entering data into the computers on their rolling carts. Nursing assistants are coming into the rooms every 30 to 60 minutes to check vital signs. Clerks are sitting at desks in the central island around which the patient rooms are arranged. In the mornings, a whole array of doctors comes by; for me, I saw the hematologist, the endocrinologist, hospitalist/internal medicine specialist, an infectious disease specialist, and a surgeon (and his assistants), who came to treat my wounds where the infections had occurred and been lanced and drained.
The non-physician and non-nursing staff is even more numerous. X-ray technicians come by to give x-rays to non-ambulatory patients. CAT and MRI technicians are located in the basement. The pharmacy staff prepares the medicines and chemotherapy concoctions and gets the blood ready for the transfusions. Technicians are analyzing lab results and recording results into the hospital computer systems.
Physical therapists give in-room treatments. The cafeteria staff comes by twice daily with the menu and checks off your choices on their iPads. The cleaning staff comes through and sweeps or polishes the floor and the bathrooms and empties the trash containers. And, of course, behind the scenes there are plumbers, electricians, elevator repair technicians, HVAC specialists, carpenters, cooks, dishwashers, patient transporters, security guards, clerks, computer programmers, data entry clerks ... ad infinitum. The list is endless. And staff has to be on duty 24 hours a day, 7 days a week.
My crude estimate is that, on the floor of the hematology/oncology ward, there are well over 200 people employed daily to take care of the 70 patients on a 24/7 basis.
According to the Bureau of Labor Statistics, health care is the most quickly growing field in the United States. In New York City, almost 10 percent of the working population is devoted to health care, driven both by its research institutions and by the aging baby boomers and their predecessors.
One hundred years ago, this army of workers – most of whom were first-generation immigrants –would have been spending its time working in sweat shops, shoe factories, boat yards, the waterfront, bakeries, and food distribution industries. Now this army of immigrants is devoted to the care of the city’s elderly.
I feel quite grateful to be the beneficiary of these heroic measures to extend my life beyond any reasonable measure of what I could have expected when I received the myeloma diagnosis.
As I read news articles that bemoan the increasing health care segment in government spending, I have to chuckle. The demographics of America is its destiny. Four million births a year in the late 1940s through the early 1960s means a rapidly aging population. There simply is no way around providing for the health care needs of that generation. My caregivers have been great to me. We have been providing them jobs; they have been providing us love and medical care.
Here’s to the graying of the American population! And here’s to the nurses and doctors and huge attending staff of the hospital behind them trying to keep us alive to experience the joys of spring one more season!
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of the columns he has written here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Prayers and thoughts are with you. I so enjoy the articles and awareness that you bring forward. This disease is a terrible blow for anyone to handle. Not a lot of people are even aware of it. I have only been dealing with it since my birthday in December of 2013. Scheduled to start my autologous BMT process on May 9th. I keep telling myself one day at a time, but that is even hard to deal with some days.
I wish you nothing but the best. And thank you for everything else you do to help promote awareness.
Thanks Stephen for this great column! Nice to get an update from you.
I am glad that you were able to celebrate such a special holiday as Passover with your family, in person and by 'FaceTime'. We use FaceTime and Skype to keep in touch with far flung family in the U.S., India, Australia and Canada too. It's a wonderful technology, I think. Just have to keep the time zones in mind sometimes when calling people!
I hope that your upcoming treatments go well and that you were able to work around not being able to use the 'port'. It sounds like you are getting great care in the hospital, and its good to know that you are ambulatory too!
It's so true that as we 'baby boomers' age, we will be putting more demand on health care services, and that many newcomers have come into our countries to help out with that. That is a blessing for all of us, to have helpful caregivers. That also helps with the 'bell curve' of population demographics, I think.
My prayers and thoughts are with you in your upcoming treatments.
A very thoughtful column. I knew that health care is one of the fastest growing employment areas in our economy. However, you really put it into focus. I hadn't really thought about just how many people is takes to run a cancer ward or for that matter an ICU ward in a hospital. No wonder it costs so much for inpatient care. One good thing about it though, you cannot offshore nurses and care givers.
I hope that DCEP works and that the two stem cell transplants are successful.
Ron
Stephen, Beautifully written. An airy tour through your thoughts winding through the city you obviously love so much.
I'm a step behind you (1948) in the first wave of the baby boom. Discovered the MM in December, 2002 ...
I'm second generation Irish, American, Bostonian. Wherever I go, it's not long before I'm thinking of home. The best part is the return, the calming of spirit I feel at the sight of this modest but enchanting skyline.
Who knows where the journey takes us next, but I pray we get years more of your poetic prose, and I hope I'm here to read every one.
The size of the health care budget keeps growing here in Canada also even though it is a public system. Sometimes our public system gets a bad rap, but I went from diagnosis (MRI, virtual colonoscopy, blood tests, X-rays, bone scans) to starting Velcade infusions in 2 weeks at a regional hospital 60 miles away. And, no, I did not have an inside track. I am a retired chemical engineer who developed sore ribs and went to his family doctor to see what was wrong.
I am quite happy to pay our health care premiums to pay for all those health care workers, as I am sure you are pleased to see what your health care insurance premiums have given you so far, and hopefully more in the future with the proposed stem cell transplants.
My son is one of those associated with health care, as he is an instrumentation technologist working for one of the largest pharma companies on the planet. I too am a boomer, born in 1949, and super thankful for the development of the novel drugs that are now giving me, and others, a longer life. I sincerely hope your stem cell transplants go well for you. You are also blessed with a sister who has perfectly matched stem cells.
All the best for you Stephen! Thanks for the insight into what could come our way in the future. Knowledge empowers, thanks again.
OK, Steve is a dear friend, so I'm biased. But this is such a beautiful essay -- redolent of so much that is uniquely wonderful about him/you: so observant, perceptive, grateful, optimistic, accepting, and striving to stay alive because life is so beautiful. How you are able to take the difficult hand you've been dealt and still stay in the game is astounding. Amazing, how much you continue to give to those around you.
I hope you will win this round and the next ones too! Thank you for writing this good article.
Being one who is also burdened by disease, and reading thru your ordeals I must ask this question that none of us want to face, and that is glaringly absent in your texts: when is it too much? at what point do you decide to stop treatments that will have very limited effect on life expectancy, yet a massive physical cost for you and a massive financial cost for society.
This is not meant to be aggressive.At some point these issues have to be dealt with honestly, not just as a back up 2 days before inevitable death.