We've gone through a week of hell, a slight cough precipitating an X-Ray which revealed, as I had expected, an old pleurisy scar from my college days. But that is just the beginning.
Ah, those college days when we thought time was a personal continuum, guaranteed to last forever, and so we did whatever we liked, reckless things at times. I was studying for finals in my Sophomore year and the dormitory was ablaze with late night studying, frequently with the help of NoDoze, strong coffee (or caffeinated tea in my case) and a cigarette burning from my lips or ashtray. We were on a caffeine induced self-perpetuating high -- a contest of how long we could stay up, and memorize for those tests, walking around like zombies and proud of it.
After finals I collapsed and developed pleurisy -- in fact a very serious case -- and I was brought over to the Brooklyn Hospital, put in a ward with some twenty other patients, and had a female pulmonologist assigned to me (unusual in those days). I never forgot her name as I found it almost comical: Dr. LafLoofy. She tested me for, among other things, Tuberculosis, and suspected I had some form of it, but never confirmed though. But the pleurisy was her main concern as I could hardly breathe and the pain was almost intolerable. I was given dosages of antibiotics or penicillin, vintage 1960's, and they were even considering drilling a hole in my back to extract fluid, but it never came to that. The worst pain came from coughing or laughing. Visitors were told not to make me laugh and all would arrive with such somber faces that I would immediately burst out laughing, then howl with pain, as they quickly but still somberly retreated. No more visitors for me.
So I spent two weeks in the ward, while the medications did their job. My companion most of the time was Theodore Dreiser's "Cooperwood Trilogy." It seemed like such a perfect piece of literary work to consume during my infirmary.
When I finally emerged from the hospital, I swore off all-nighters, took a little better care of myself, but I was right back smoking, and continued to smoke a pack to a pack and a half for the next 13 years. I had smoked three years before, so that's 16 years of smoking plus both my parents smoked and our house and car were always a blue haze of smoke. Those were simply the days when everyone smoked.
Fast forward to this past week. So, when my slight cough could not be explained, my Internist took an X-Ray which to no one's surprise revealed that old pleurisy scar from a half century before. That being explained, he put me on an antibiotic, but the following morning he called me to say that he decided to compare my current X-ray to one taken two years ago as a precaution. He thought he saw a change in that scar and thus a CAT Scan was ordered. He called the next day with scary results; I had an 18x18x23mm mass in the upper left lobe, partially calcified. This was completely unrelated to my pleurisy scar, so it was considered an "incidental finding." I was referred to one of the top thoracic surgeons in the area. We were stunned.
The anxiety level for me and my wife started to go off the scale. I probably spent most of that day on the Web reviewing the sad, gory details about lung cancer, something with which I was already familiar as one of my best friends, Howard, died of the disease at only 62 and I know what he went through. It has to be one of the worst cancer deaths, surgery, radiation, and chemo, mostly ending in limited life spans. What's the point I thought?
The first appointment I could get with the surgeon was not until the following Tuesday, a wait of four nerve wracking days. Before all this began, Ann had already left to attend a Jane Austen Society of North America convention in Minneapolis, where I insisted she stay, so I was alone for those four days to do more research which only resulted in more anxiety and the need for accepting whatever fate was about to throw at me.
It occurred to me that as I handle all investments and bill paying, running the house, my poor wife could be left with a quagmire so I spent a good part of this time, piecing things together, trying to put together a coherent document for her. In effect, I was doing that hackneyed phrase of "getting my affairs in order." I was preparing for the worst, hoping for the best, but getting done now what I might not be able to once operations and/or treatments began. I even reviewed our Trust documents, found questions regarding that, and made a list to discuss with the firm that would become the trustee. Luckily, friends were around to have dinner with, so there was some diversionary activity, but when I returned to the quiet house at night, dark thoughts interceded.
Finally, Ann returned home last Monday night and so, together, began a week of Doctors' visits, testing, and anxiety. The surgeon reviewed the Cat Scan with us and was brutally frank in his assessment: it most definitely appears to be cancerous and because of its location and my prior thoracic battle with open heartsurgery, made it unlikely that I would survive the "gold standard" surgical operation of removing the mass. His recommendation was the "Cyberknife" alternative, a remarkably non-invasive method of "cutting" out the tumor with high dosages of radiation that are aimed directly at the tumor from multiple angles.
I wondered why everyone would not opt for that treatment, but I suppose the gold standard of surgical removal is "gold" for a good reason. He explained that when a needle biopsy is done through my back and into the lung, the radiologist would leave a fiducal marker which would be used as a target for the radiation treatment. As anyone can imagine, we left his office reeling with fear and dread.
First, though, he ordered a PET Scan which I had to prepare for, hoping that it would not reveal any other cancers in my body. Preparation included not eating any foods with carbs or sugars the day before and then fasting the day of the procedure. The afternoon of the PET Scan I was injected with radioactive isotopes (with their caution that I can't be near children or small pets for six hours afterwards because I would be emitting radiation). After injection, I had to go into a dark "quiet room" so the radioisotopes could be fully absorbed by my body. Nearly an hour later, I was led into a room with a long, narrow tube where a full body PET scan and CT was performed, and had to lie perfectly still in this confined space for a half an hour. Given what I was likely to go through afterwards during the next several weeks, I thought this a piece of cake.
The following morning, we had to pick up the PET Scan (all images on a disk of course) as well as a radiologist's written report to give to my surgeon with whom we had an appointment only 20 minutes later. Naturally, we opened the report in the car beforehand, looking for any sign of malignancies elsewhere in my body. Hooray, there appeared to be none, but reference of course was made to the tumor in my upper left lobe.
So, we arrived at the surgeon's with a list of questions regarding the biopsy, the need for a marker (collapsed lung is frequently the consequence of fiducial markers), the timing of all of this (Ann had a trip to Africa planned which she was planning to cancel that very day), when treatments would begin, the required follow-ups, and of course the prognosis.
When the surgeon and his nurse entered the room, I told him we had peeked at the report, was thrilled there was nothing else, and then started to ask him about the biopsy. He said, what biopsy, the tumor is benign, that the Pet Scan clearly showed that. We were stunned. What? Huh? No, he said, the scan showed there were no active cancers. We had won the lottery he was glad to report (no apologies about his prior certainty that it was cancerous). Unfortunately, we did not recognize the "doctor speak" when reading the PET Scan report. Phrases referring to the mass --- such as "this is grossly stable; no abnormal uptake is identified" were key, identifying no active cancer, no need for a biopsy at this stage, and only a CAT Scan follow up in 6 months. The tumor might be an old TB granuloma (my speculation), and if so the likelihood that it will become active after all these years is slim to none.
We left his office both stunned and elated, hugging and dancing in the parking lot of the medical office, shocked at this totally unexpected piece of good news. But the whole experience left me with renewed appreciation of the struggles of any cancer patient and I remember friends such as Peter, Lindy, and Howard, all of whom died of the disease, and of course my own father who had perhaps the worst, pancreatic cancer. My friend Jeremy (one of Peter's sons) had pancreatic cancer but it was the type that could be addressed by the radical Whipple surgery. He went through hell, and as a relatively young man, but survived. It was the same kind of pancreatic cancer Steve Jobs had but who, instead, chose a naturopathic route.
Luckily, we hadn't told the world about the "fact" that I had lung cancer. We wanted more details from the biopsy first. Nevertheless there were a handful of friends, and of course our sons, who knew what we were going through. Support is such an essential element in facing this dreaded disease so we thought we would bring a few into our beginning nightmare. To those we involved in this tale early on, thank you for your emotional support, and we're sorry you, too, were taken on such a distressing emotional ride.
I had but a brief glimpse into the emotional path cancer patients have to walk -- into a void of fear and unknowns that the medical community might be inured to, but not the patients and their loved ones. I was certain I had read something very profound on that very topic and discovered that a few years ago I had already quoted it in my blog, but it bears repeating here. It was written by John Updike in his Widows of Eastwick, towards the end of his own life and only one who has walked the walk could have written this (in the novel, Jim has cancer): Jim's illness drove her [Alexandra] and Jim down from safe, arty Taos into the wider society, the valleys of the ailing, a vast herd moving like stampeded bison toward the killing cliff. The socialization forced upon her -- interviews with doctors, most of them unsettlingly young; encounters with nurses, demanded merciful attentions the hospitalized patient was too manly and depressed to ask for himself; commiseration with others in her condition, soon-to-be widows and widowers she would have shunned on the street but now, in these antiseptic hallways, embraced with shared tears -- prepared her for travel in the company of strangers
Briefly I had thought that was to be my own fate, and, just as worse, Ann's, but thankfully not yet.