Manhattan Tales: Entering A New Phase Of Life

This summer, for the first time in the 40 years that we have lived in New York City, my wife and I have arranged to spend weekends in “the country.”
While we knew many people who regularly went with their children to a cottage in the Catskills or the Berkshires, three to four hours away, I always marveled at the weekenders’ organizational skills. How did they compress work and household management into five days? When did they do the laundry and the grocery shopping? Where did they get the emotional skills necessary to gather their children in the car and join the traffic lines on Fridays? How did they manage two households?
We somewhat smugly told our friends that Manhattan was such a fine place to play on the weekends. Museums, parks, and bicycle paths are plentiful, as are concerts and plays, indoors and outdoors. Long Island ocean beaches are a train ride away for riding the waves and listening to them crash against the shore. And great hiking is available in the Hudson Highlands, a 90-minute drive from the City. And anyway, how can you live in a place that doesn’t have a 24-hour grocery store across the street, an adjacent pharmacy, dry cleaners, and restaurants too numerous to mention?
However, this year we decided to join the country weekenders, in large part because of the stage of my multiple myeloma. This, of course, requires abandoning our smug attitude toward country weekenders, but friends have been forgiving (perhaps because of the myeloma diagnosis).
The impact of the multiple myeloma on our routine has been enormous.
First of all, I have to be at the medical center frequently.
The current stage of my myeloma treatments involves weekly (or often twice weekly) visits to the medical center: my Pomalyst (pomalidomide) treatment has required weekly blood tests to ensure that my white and red blood cell counts don’t drop too low.
In addition, I spend four hours each month at the medical center receiving an intravenous gamma globulin infusion. Add to that another monthly visit with the medical team.
On top of that, I may start Kyprolis (carfilzomib) later this summer, which entails two intravenous infusions a week.
All these medical visits preclude planning for any lengthy vacation, so weekends are all that is available.
Second, the side effects of some of the treatments have required that we cut back a lot on our former Manhattan summer activities.
After my stem cell transplant last year, I can no longer bicycle at all because I never quite recovered my balance and my hands have been too delicate to hold the handlebars for any length of time. I dream of our old bicycle rides, and perhaps on some cool quiet morning, I will try a short ride.
Any walk or museum visit longer than an hour has to be broken up by frequent rests because of neuropathy in my feet. The thought of hiking beyond a mile or two is really intimidating, for I am one of the relatively rare patients who suffers renewed neuropathy from Pomalyst.
Finally, and probably most importantly, I’ve been spending four to five hours swimming in a pool every week, so my wife thought that lake swimming would be a great treat for me. I know she is right. While I have loved the rhythm I have established swimming in the pool, swimming in a clean, fresh-water lake (particularly one like ours, that prohibits motorboats), is indeed a great pleasure. My family annually vacationed on a small lake near Mackinaw Island in Michigan, so I learned in childhood the pleasures of lake water swimming.
Thus, going with the flow, we have joined the hordes and arranged a weekend rental 70 miles north of here. The cottage and lake are located in rural New York City water supply country, adjacent to a 14,000 acre New York State park, just east of the Hudson River.
We take the train to a small, nearby town where we rent a car and drive over to the lake.
We just spent our first weekend there, swimming, canoeing, and getting acclimatized to the rustling of leaves, open windows, and chirping birds.
Rural living will require some adjustment in our orientation and a whole new way of organizing our daily lives, but hopefully we will find this new experience rejuvenating.
As many other columnists have observed in their Beacon articles, the diagnosis of active multiple myeloma changes almost every aspect of your life.
I’ve spent a great deal of time trying to learn the basic biology of the disease and treatments. I live with a constant awareness of my mortality and have attempted to get my personal and financial affairs and possessions in some sort of reasonable order.
The rhythm of the week is disrupted by my dex days, and I have had to learn how to avoid “roid rage” and other mood swings induced by the medications.
I have learned to slow down. I have had to learn how not to fight too hard against the waves of exhaustion that mysteriously hit me some days: I have become a master of the 20-minute nap, sometimes twice a day. I have learned to let a crowded subway train pass by and wait till there is a train that comes into the station where there is a reasonable chance that I can get a seat. I have learned that there is no need to rush across an intersection just as the “Don’t Walk” sign is flashing its last warning sign. I thank drivers for yielding to the unsteady person (me) in the crosswalk. I have become an afficionado of nature in Central Park, which I almost always cross on my way to or from the medical center.
And now I have become one of those country weekenders, who, feeling a bit guilty at my disloyalty to the city, travels to the country for greenery, clean air, and lake swimming.
I hope to have some country tales to add to the Manhattan tales I’ve been writing about these last two years.
Happy Fourth of July weekend to everyone, and to those readers who are patients, here's to understanding the new rhythms and phases of our myeloma-infused lives!
Stephen Kramer is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Stephen, I hope that you and your family have a wonderful time on weekends up at the lake area. It sounds cool and refreshing too! I have been in New York in the summer, visiting relatives and taking in the sights, and it was pretty warm there! So i am sure that the lake area will be lovely to cool off in. Hope all goes well with your health in the next while. Happy Fourth of July too...you have a lot to celebrate in your country!
I think it sounds great! I grew up @ 90 minutes outside NYC, in Highland Mills ,NY. It was a wonderful rural area. Now, not so much due to its commuters to NYC.
I left there many years ago and now live in beautiful Northern California .
Enjoy every moment, and that lake swimming. BTW, even though I don't swim now as there is not a pool close enough,Lake Tahoe can be some great COLD swimming.
Best to you.
Thanks for your article on transitioning from NYC to the country. Your difficulties sound a bit like what I feel when we visit relatives in Florida, who live in a gated community. The nearest supermarket is an hour's walk away. My wife has MM. We want to find a weekend place out of NYC but near the ocean. She is deathly afraid of bees, so I do not think a rural setting would do. Can you recommend a place or an agency? We know next to nothing about these things. Thanks much. Edward
Seems like you have the beating of this insidious malady. The worst aspect is no matter what medication is engaged with there is no route back to health as each treatment brings its own side effect. The key to sustaining a quality of life is to accept that one has to adapt to each impact and keep moving. Never fear to embrace live, this way you will be to busy living to notice mortality. Many times I have purchased a one way ticket to be amazed, true tourism " the never ending holiday"
I'm all in favor of water therapy--pool, lake, jacuzzi, bathtub, shower. Swimming gives the body a chance to move despite any stiffness or bone issues. I went for a swim in Lake Erie this afternoon and feel the afterglow of all that refreshment. Have a wonderful summer at your weekend cottage!
Savor those weekends! This was a wonderful read.
Stephen ,
It seemed in your last postings myeloma was completely dominating every minute of your day, but now you have been able to grab some of the time back and enjoy living again. Really good to hear from you.
Stephen,
As a rural/country person, I enjoyed your post as viewed from someone on the 'other' side. My wife and I live in the suburbs and every chance we get we head deeper into the mountains. In contrast, we look forward to our one annual weekend trip to experience 'the city'. Thank you for sharing.
I also related completely to your concept of everything changing with MM. We have all heard of double time, hard time, half time, time and a half, part time, half time, overtime, etc. but I like to distinguish that from our 'new normal' of MM time. MM time forces us to slow down, to be slaves to exhaustion, and see life in slow motion examining our lives, our mortality and our relationships with a whole new perspective. Our calendars are driven by medical appointments and regimented daily times for medications. Compared to our activities and scheduled per-diagnosis, MM time has put all that asunder as we now focus on doing the little things that might provide us a link back to the 'old' normal.
Thanks again for sharing and have a wonderful time in the county!
ez