Named not in hubris but in honor and memory of Austin M. Wright, who taught me critical thinking, and his teacher, Wayne Booth, who coined the phrase.

Wednesday, March 7, 2012

From theory to reality

Reading obituaries over the years, I often wondered how I would face a terminal illness.  It was purely theoretical, of course, as I weighed that against the pro’s and con’s of dying suddenly in a plane crash.

In mid-August 2011, I had a chest x-ray for heart attack symptoms.  My heart was fine, but an x-ray revealed a mass in my chest.  A CT scan confirmed something in my mediastinum, the space between my lungs.  In the next few days, as I went from pulmonologist to thoracic surgeon to radiologist and from scan to scan to biopsy, the news got worse.  By mid-September I had a diagnosis of Stage 3 non-smoker’s lung cancer.  The doctors I saw were in general agreement that surgery was extremely risky, if not impossible, because it appeared to be entangled in nerves and blood vessels.  So I began chemotherapy.

At the same time, my oncologist at George Washington University Hospital encouraged me to see a specialist at Johns Hopkins, and in mid-October, I did that.  He confirmed the chemo cocktail I was taking, and he suggested that if the chemotherapy seemed to be effective – to be determined by a scan after my second treatment – there was a surgeon at Hopkins whose opinion I should seek.

Friends shared with me in these early weeks the positive stories of people they knew who had survived – or are surviving – various kinds of cancer.  Some of them told me more than I wanted to hear, though I knew their intentions were good.  Because it was widely known that my husband and I were scheduled to spend five months serving the congregations in Milan and Florence that we had served the previous year, we shared widely with family and friends the reason we were not returning to Italy.

For the most part, we retreated.  My treatments were on two days every three weeks, and for a few days after, I would be extremely fatigued.  We avoided crowds, saw a few friends, and relied heavily on Gmail and Netflix.  We spent a lot of time in doctors’ offices.

Primarily, I tried to cope with my new reality.  Now I had limited time, according both to the doctors and the weight of statistics for this kind of cancer, and my once-abstract question would be answered:  How would I respond?

The lung oncologist at Johns Hopkins had told me to “acknowledge the statistics and then set them aside” because each case is different, and I was a “healthy 64-year-old woman with cancer.”  All my doctors advised me not to rely on the internet for accurate information.

At the time of my diagnosis, I was devastated, of course.  There is no imagining – or forgetting – the feelings I had when the young E.R. doctor sat down and said, “We need to talk.”  I read as much as I could, bit by bit, of Rabbi Harold Kushner’s When Bad Things Happen to Good People.  My immediate assumption was that I was not a good person, that I must have done something wrong to deserve this punishment.  No, I hadn’t smoked (everyone’s first question).  I asked myself over and over, “Why don’t bad things happen to bad people like terrorists and dictators?”

I had to accept that my having cancer was something I could not control.  Nor could I control the doctors’ schedules nor the time that elapsed between having a test and learning the results of the test.  I could be treated, but I couldn’t control whether the treatment would be effective.

Early on, I recognized the value of Kushner’s message:  what matters is not the amount of time one has but what one does with that time.  I didn’t want to waste it.  The projects that mattered to me were my writing, my genealogical research, and the appropriate disposition of my possessions.  My bucket list was not traveling – though there are plenty of places I would like to visit – but rather controlling my legacy.

In many ways, I am the self-appointed keeper of our family stories and history.  I must write them down to pass them on.  And in the last few years, I had given away the possessions of my in-laws, my parents, and my aunt, making literally thousands of decisions about treasures and junk.  I wanted not just to spare my family this chore; I wanted to make my own decisions about photos, papers, jewelry, purses, scarves.

My other resolution was to try as best we could to live as if I did not have cancer.  In a way, in part I believe because I was asymptomatic, I was in denial, but I also recognized that I did not want to immerse myself in the world of cancer.  In addition to staying off the internet, I did not seek out any groups.  I really didn’t want to hear from strangers; I spoke to friends who are survivors who had valuable lessons to teach me.  After a few minutes of talking about me, I always tried to turn conversations in other directions. 

In November we learned that the tumor had shrunk significantly.  I applied to see the surgeon at Hopkins – a process not unlike applying to an Ivy League college – and was accepted, not just to see him but to be operated on by him.  Eventually, I completed five chemo treatments and had my surgery on January 24.

When the doctors removed the upper lobe of my right lung, the tumor came out with it.  It had not been attached to my chest wall, despite its appearance on the various scans.  The only affected lymph gland the surgeon could find was in the part of my lung that he removed.  The procedure the doctors used was VATS (Video-Assisted Thoracic Surgery), during which a camera and a knife were inserted under my right arm through small incisions.  This less invasive method, plus the fact that I was in good health otherwise, meant that my recovery has been relative rapid.  Though not painless, it has been remarkably easy.

I face five years of scans:  five years of the kind of nervousness and waiting that were telescoped into five intensive months.  I remember how apprehensive I was the night before my needle biopsy, then my first chemotherapy treatment, then the night before my brain MRI, then the night before my surgery.  It did get easier, for me.

Many friends have asked if I am angry that the doctors were initially negative about my prospects.  I am someone who lives by Mel Brooks’s lyrics from The Twelve Chairs:  “Hope for the best, expect the worst.”  Having heard the worst news at the beginning, the relief is palpable.  Having been given hopes that turned out to be false would have been as devastating as the original diagnosis.

In addition to being declared “disease-free,” much that is positive has come out of my experiences thus far.  Over the weeks, as people learned about my illness, they sent messages that demonstrated how much they cared for me or – if they didn’t know me very well – how much they cared for our family.  I knew that the Mi Sheberach prayer was being said for my recovery in synagogues around the world, and that my non-Jewish friends and neighbors were praying for me in their churches.

I did get a lot accomplished in terms of my long-term goals, though there is still much to do.  My article about searching for the truth about my great-grandfather is about to be published as a “success story” on the website  I blogged about my maternal grandfather’s family, early Iowa merchants.  I have organized most of my published and unpublished materials into a meaningful format.  I have cleared out file drawers and begun to donate photographs and papers to the Chicago Jewish Historical Society, the American Jewish Archives, the Indiana State Historical Society, and other repositories.  I’ve used a portion of my collection of postcards to thank people who sent me cards and jokes.  There is still much to do, but at least I have begun.

Bad person, good person; smoker, non-smoker; radon, backyard electrical transformer; good genes, bad genes.  Cancer is unpredictable and controllable only within limits.  There is a seemingly endless variety of cancers.  Everyone responds differently to treatment.  Because I have been a seriously hardcore control freak, this was perhaps the most difficult challenge to me.  I could not explain or control my cancer, but I can control how I respond to it.  I hope I won't need reminding.