How It Began

Back in December, Nick discovered a lump in his neck while he was shaving. He pointed it out to his internist at his next check-up. Doctor H.  was not alarmed. He suggested that it might be  just an infection reaction.

However, come February, the lump remained.  Doctor H. said it was good that Nick returned to him to have  it rechecked.  He arranged for Nick to have an ultrasound of his neck area. The results were that the lump  was either a swollen  lymph node caused by either infection,  or lymphoma, or squamous cell carcinoma. Infection, please let it be you!

Nick goes to  an ENT team in Hamden (or Milford) for his ear issues, so he made an appointment for a check-up with them. They performed a biopsy on the swollen lymph node. It was not an infection.  The diagnosis was squamous cell carcinoma. At that point, I knew very little about squamous cells, but it seems that we all have many of them, especially in our skin and in our mucous membranes. Squamous cell carcinoma never originates  in a lymph node, so  it must  have metastasized from somewhere else in the head/neck area. A PET scan was ordered to find out the source.

The PET scan examined Nick’s body from his head to his thighs, and  it was great news that  99% of his body showed nothing abnormal.  But the other 1 % was  an “area of concern” at  the back of his tongue. We returned to his ENT doctors for a tongue biopsy. The doctor told me  he “biopsied the hell out of” Nick’s tongue even though  he didn’t see or feel anything unusual. The result: the source of the carcinoma is indeed  the back of Nick’s tongue.

A diagnosis of cancer implies the need for surgery, radiation, and chemotherapy.  Tongue surgery is not  typically done because it impacts negatively on people’s abilities to swallow and to talk. But the doctors did want to remove the malignant lymph node in Nick’s neck.

The ENT doctors use a surgical center  in Hamden (or Milford) for their work rather than  a hospital. We had to be there at 6 AM. I remained in the waiting room rather than going home and returning, because it couldn’t take very long to remove one malignant lymph node, or so I thought.  At 11 AM, after I had read every magazine in the waiting room twice,  I started pacing. The nurses put me in a private waiting area because I  was upsetting everyone in the regular waiting room.  At 11:15 AM, they brought Nick out of the surgical area. His anesthesia was wearing off, and he was very wobbly.  He had thirteen  staples holding the  six inch long incision  across his neck together, and a drainage tube connected to the incision. All this for one lymph node? No, the ENT doctors had removed about a dozen lymph nodes from  Nick’s neck for checking. Fortunately, only the original one was malignant.

Then they gave me a sheet of paper that contained directions telling me  how to be a post-op nurse. I was to keep Nick from getting a fever, to apply salve to the staples in his neck, and to check  and empty the drainage tube. If any of those things became problematic, I was to call them. We live 35 minutes from the doctors, so if something went wrong, how could they help him, being that they were such a distance away? Thankfully, nothing went wrong.

Before the doctor dismissed us, told us to make appointments with a radiology oncologist and a medical oncologist. He told Nick not to lift anything for a  month.   I wasn’t worried about Nick lifting anything because he could barely stand up. But when we got home,   after a worker arrived to install our new window treatments, I turned around to see Nick carrying the old ones to the basement. So much for not lifting anything!

I have to  explain that Nick has a good friend who had practically the same diagnosis, squamous cell carcinoma, several years ago. Nick wanted to go to the same New Haven  doctors who helped his friend. But  his friend lives in New Haven! I asked the ENT  doctor who  did Nick’s neck surgery  if there was a any medical reason that Nick needed doctors who practiced in New Haven. They assured us that  we could take the diagnosis to doctors closer to home, and they would follow the same established procedures as would New Haven doctors.  Nick was reluctant not to use his friend’s doctors, but he agreed to go local. Hello Norwalk Hospital, 6 miles from home!

Our next appointment was at Norwalk Hospital, with Dr. P.,  who would be Nick’s radiology oncologist and who had been mine 25 years ago when I had breast cancer. Now he is head of the department as well as an instructor at Yale. He remembered us! Then  we met Dr. N., a medical oncologist, also an instructor at Yale. They told us that Nick would receive radiation daily for seven weeks and chemo concurrently once a week. We learned that the chemo was specifically designed to make the radiation more efficient. In fact, they described two different types of chemo, each of which with its own side effects, and told Nick to choose! The one he selected attacks squamous cells; the one he rejected could cause eye and ear difficulties, which Nick wanted to avoid. His choice had to be approved by the insurance company, because it costs $30,000. Twenty-five years ago, my entire cancer experience was at a cost of $27,000, and now it’s more than that for  just the chemo!

Dr. N. told us that during chemo Nick’s skin would be very red, and would be covered with a rash, but there were medications to ease the itch and to prevent infection.  Dr. P. described side effects of radiation. We decided to deal with each one as it arose.

Dr. P. wanted to be certain that Nick’s mouth was ready for the treatments that were to follow. He called Dr. F.,  a periodontist to whom he refers his oral cancer patients. It typically takes three months to get an appointment with Dr F., but he saw Nick the next day. In the morning Nick had his teeth very thoroughly cleaned. In the afternoon, the Dr. F. stitched  Nick’s gums. Dr. F. told Nick  to call him any time, even if he was on vacation. He said he’d rather have ten calls that didn’t amount to anything rather than miss one important one. He also explained that he would be giving Nick oral check-ups every six weeks for the following year. He was well aware that  all this is not covered by insurance. He told Nick that if the bill was a problem, he should pay what he could, when he could.

Then Dr. F. made Nick an appointment with an endodontist in order for her to further investigate a spot on one of Nick’s dental ex-rays; she had to fit him in the next evening because her regular appointment slots were filled. She has a 3-D mouth CAT scanner!  She sent the images she took to a specialist in California  for further analysis. He concluded that the area of concern with Nick’s lower front teeth was actually not a problem.

The next day was Friday. Late in the afternoon, Nick  thought his  neck incision was swollen. It was, indeed, puffy. I insisted that he call the surgeon. The surgeon directed me to bring him to the emergency room at St. Raphael’s Hospital in New Haven, at least 40 minutes away.

Having  had only  one page of directions in being a post-op nurse, I had no idea what  was happening.  I was afraid Nick’s neck would continue to swell. What if it ruptured? I’ve watched many medical shows. What if he bled out while I was driving? Highway driving is not my favorite thing. On  Friday nights there’s  extra traffic, and  there would probably be  extra patients in an inner city ER.  Fortunately, a friend was able to drive us.

The ER at St. Raphael’s  in New Haven was different from any other I could recall. There was a  young couple  there with a toddler and a newborn who was obviously the patient. There was also another family that was so large that  I could not determine who was the patient. It seemed that aunts, uncles and cousins kept arriving, all greeting each other with hugs and kissses, more like a party than a visit to the ER! Fortunately, Nick’s ENT doctor  had called ahead so the ENT resident and his student were ready for us. They were both charming! They told me that Nick had  a hematoma. Did I know what that was? Of course not. The last time I heard that diagnosis was on the TV show “Ben Casey” when I was in high school. They explained that a space in his neck had filled  with blood and “other fluid.”  They withdrew two syringes of the blood and other fluid. They also installed another drain, and instructed us to see the ENT doctor on Monday. Fortunately the rest of the weekend was uneventful and after another round trip to/from Hamden (or Milford), the second drain was removed.

I neglected to mention that both Dr. N. and Dr. P. asked Nick how long he was in the hospital after the surgery that removed his lymph nodes. They were amazed to hear that he was never in a hospital at all. I know that hospital stays are very costly, and that many people get sicker in hospitals than before they were admitted. However, in my opinion,   Nick needed to be monitored by a health care professional after his surgery rather than being dismissed to my care. I do take  annual classes in first aid and CPR, but they did not address the tasks given to me.  At this point I became unable to sleep soundly for fear that something awful was about to befall  Nick.

Many people have asked how Nick reacted to the news of his cancer and its  impending unpleasant treatments.  One of his favorite stories has the punchline, “With all this manure, there must be a pony somewhere!” He has reacted like a scientist, trying to “find the pony”  and  figure out how to resolve each day’s challenges.

Before the treatments began, we met with a  nutritionist. Dr. P.  had told me to try to get Nick to gain weight, and I wanted suggestions for doing it in a way that would not bring back his diabetes, from which he has been officially cured for a few years by keeping his weight low. The nutritionist had some helpful suggestions for us.  I presented  her with a description of our typical daily  diet, after which  she said to Nick, “Listen to your wife.” I should have that embroidered on his pillow!