The Sound of the Train Whistle

Marty and I had a wonderful time in Michigan and enjoyed seeing family and friends—not to mention Steve and Robin’s wonderful cooking!   We are now back in New Hampshire, where this morning I was awakened at 5 a.m. by the sound of a distant train whistle.   Although we  live in the country, we are only about 10 miles from Brattleboro, Vermont, and when the wind is blowing our way, we can occasionally hear a whistle from the tracks that run along the Connecticut River to our west. My friends and neighbors who grew up with me in East Tawas, Michigan, will immediately appreciate that this is one of the most comforting sounds in the world to me.

There were railroad tracks in front of our house on East Bay Street, and The Detroit and Mackinac train, now defunct, rumbled by several times a day and night.   At its height, it carried passengers as well as freight, but the passenger service was a victim of the increase in automobile ownership and improvement of roads to the larger cities of Bay City, Saginaw, and Detroit to the south, and was discontinued when I was in grade school. As children, my friends and I used to put pennies on the track, which the next thundering train would dutifully flatten unrecognizable (but nothing more valuable than a penny—for a nickel, you could see a Saturday matinee, or buy very nice marbles at the five and dime).   On its daily runs north and south, the train shook the entire house— pictures on the living room wall had to be readjusted several times a week.  Every night at 11 p.m., the rumbling of freight cars, as the train headed north to its terminus in Alpena or Cheyboygan, would put me to sleep—I never quite dozed off until I heard that familiar sound. When I moved away to college, I missed this nightly drama, and it took me some time to learn how to drop off to sleep without it.

Later in his life, my dad developed a ritual with two of the three conductors who ran the trains in the evening.   My grandparents had a hurricane lamp (pictured) that Dad inherited and that now sits by the window in our fireplace room. I never turn on that lamp, which sat in my parents’ sunporch for years, without thinking of my dad.  As he saw the train was approaching in the evening before he went to bed, Dad would briefly “signal” the conductor by turning the lamp on and off a few times—and the conductor would toot the train horn in reply. At least, two of the three of them did—Dad groused that he could never get the third one to go along with the program. Where he got this idea I haven’t a clue—one of the wonderful things about my father was his constant ability to take up some new delight in life.

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My favorite author, Haruki Murakami, has written, “memories warm you up from the inside. But they also tear you apart.”  The second part of that quote isn’t really true here, but the first certainly is.  I think it likely that I will never make it back to East Tawas again, but this morning I was warmed by memories not only of my childhood there, but my dad’s final years. All from the sound of a train whistle.

 

Life in the Moment–and a Happy Passover!

 

First of all, let me thank all of you who have responded to my last blog post and for your warm and generous support.  I really appreciate it.   As I have thought about upcoming topics I want to write on, some are heavy and others lighter—I do have an active sense of humor, even about something as serious as having terminal illness (some have accused me a being a smartass, and I am going to do my best to keep that reputation for as long as possible).  Today’s post is, I trust, neither too heavy nor too light– I hope like the matzoh balls my Jewish friends and their guests will be enjoying this evening! 

This week, a wise woman in my online support group wrote in response to someone who was struggling emotionally, “Cancer not only wants to take over our bodies, it also wants to take over our thoughts.” I have thought about that a lot since she wrote it.

When you have a terminal diagnosis, it is difficult to wake up in the morning, or go to bed at night, without thinking about your disease. For people who have active symptoms, either from the disease itself or from side effects, physical discomfort only adds to these feelings. It is easy to let this become overwhelming. I count myself lucky that I have never suffered from clinical depression, which can certainly be exacerbated by serious illness. But I also realized after considering my online friend’s words a bit more deeply, that life in the moment has taken on a new meaning.

It used to be that I lived in part in the future—sometimes a year or more out. I could easily think about plans for next month, next year, even a few years down the road. This all changed when I went into active treatment.   I was initially on a clinical trial (more about those in a future post) where I had to have infusions two out of three weeks. It was a Japanese sponsored trial, and, in typical Japanese fashion, had no flexibility for missing treatments other than for medical reasons (e.g. low white blood cell counts). This meant cancelling one international trip that coincided with a treatment week, and ensuring that any other travel I did was on “off” weeks. Soon, I learned that my life had also to be planned around regular CT scans –usually two to three months–to check the effectiveness of treatment.

Now, as the disease has progressed, my sense of the present has narrowed even more. I am down to weeks, days, and increasingly, moments. This is not necessarily a bad thing, in fact, in some ways it is a blessing.

A few years ago, I did an intensive meditation training called Vipassana (you can read my rather lengthy review of that experience here.  ).  A primary teaching is that all things are impermanent, and suffering comes from craving and aversion and attaching oneself to what is only going to pass away.   While I am spotty about meditation these days, I am trying to live by this teaching and to enjoy life in the moment.   For example, I have a couple of friends who have been generous about walking with me on the rail trails near where we live, an activity that picks up my spirits considerably.   These glorious spring days in New Hampshire have been wonderful for this, and I hope to continue for as long as I’m physically able.  Later today, Marty and I are headed to Michigan to celebrate Passover with family, and to see old friends.   I am really looking forward to this and to savoring every moment (not to mention Cousin Steve and Robin’s fabulous cooking…..)

One of the most famous prayers in Jewish liturgy, which comes from the story of Hannah and her lament about being childless, is very short but relevant here: “Let me not die while I am still alive.” As I try to live these words, I wish all who are celebrating, a sweet Passover filled with memories to treasure.

 

 

 

After a long silence….

2014-08-23 19.39.18When I began this blog nearly five years ago, it didn’t occur to me that I wouldn’t live to see the other side of my 60s. I come from a family with considerable longevity on both sides.   Only one aunt on my mom’s side did not make to 70—and she missed by only a few months. But despite my genes, it appears increasingly likely that I will join her. Now I am back to blogging, partly as therapy for myself–a way to process what’s happening—and partly to inform  and leave a contribution on what it’s like to live, and die, with a terminal illness.     And, because there is so much misinformation out there about breast cancer, I’ll write about that, too.

In December of 2014, I was diagnosed with a recurrence of the early stage breast cancer I had in late 2010–the cancer that supposedly had a little more than a 10%  chance of returning.   I had no symptoms—the diagnosis came when my oncologist, on a routine 6 month visit and in the face of a normal mammogram, detected what seemed like an enlarged lymph node under my arm on the surgery side.   I felt fine, but I was suddenly plunged back into the world of cancer—ultrasound, biopsy, CT and PET scans, an MRI, numerous blood tests, and a bone scan.

The news was not good—in addition to a couple of lymph nodes under my arm, the cancer had metastasized to my bones and some additional lymph nodes in my chest—but as my oncologist reassured me, it was not an immediate death sentence, either. When metastatic (or Stage IV) breast cancer is confined to the bones and lymph nodes, it is not curable, but can often be treated successfully for a number of years. My burden of disease was low, I felt fine and I was otherwise in excellent condition. I continued to work and to run, including completing four half marathons in the first eight months of my diagnosis. I had few side effects from my first line of therapy, other than some hair thinning.

Because I felt so well, I kept my diagnosis fairly quiet. A few close friends and family knew, but that was it. It helped me lead a more normal life, even though my new normal was coexisting with a terminal illness—kind of like living with a tiger that was tame and sleeping at the moment, but might wake up to pounce at any minute. Although the average life expectancy of a metastatic breast cancer patient is a little more than 2 years,  there is considerable individual variation, and I thought I had a good chance of being one of those people on the long end of the statistical tail.

Sadly, it is increasingly evident that this is not to be.   The first line of treatment  gave me only a little more than 5 months before the cancer started growing again—and the second one even less than that. At the end of last year, scans showed that the cancer had also moved to my liver. A third treatment this winter has similarly failed, and now I’m on to a fourth, all in the space of about 15 months.   By all measures, including sophisticated testing of genomic mutations, the treatments should have worked for longer than they did.    But research dollars for metastatic disease are woefully inadequate, so scientists don’t yet understand why some people respond to certain treatments—sometimes for years– and others don’t.

In the past few months, I have realized that there is a lot I have to say about this whole chain of developments, an unexpected deviation in the road of my seventh decade.  So I have decided to go public.    If you’re up for it–and I realize many may not be– join me on this adventure into the unknown. I’ll write for as long as I can about both living and dying.