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 June 2008 Post Book Essays The Flip Side, Part I - June 18, 2008 The Flip Side, Part I - June 18, 2008 We've had a couple of weeks of hell. It all started back at the beginning of the year when Steve began having difficulty swallowing. He has a history of reflux and hadn't been taking his meds while tending to me and my crises. He finally saw his gastroenterologist for a rescheduled upper GI series at the end of March. Following the old medical school maxim "If you hear hoof beats, look for a horse, not a zebra," the doctor looked at his esophagus and stomach, saw inflammation from Steve's not taking his Prilosec and made the logical conclusion that Steve's swallowing problems were easily attributable to reflux. Steve got the "Dutch Uncle" talk about taking his Prilosec as prescribed, twice a day before breakfast and dinner, and began a period of faithful compliance. Despite this, the swallowing problem persisted and even worsened. His swallowing mechanism was often disorganized or would just stop, leaving him with a wad of food stuck in his throat and a sensation of choking. It made him anxious, which made the problem even worse. He returned to his gastroenterologist, who scheduled a barium swallow, to see if a real-time X-ray might show what was going on. The barium swallow showed a suspicious place in a little fold of the throat called the piriform sinus, just above the larynx. Steve had every risk factor for throat cancer: male, over 60, former smoker, and lousy nutrition, not to mention sustained stress. We made an appointment with an ear, nose and throat doctor who also deals a lot with head and neck cancers and braced ourselves for the worst news. The barium swallow had shown a mass between 2.5 and 3 cm, about the size of a walnut. Suddenly, our roles were reversed. Steve was the one facing the probability of a grim diagnosis and the rollout of surgery, radiation, chemo, and an uncertain and possibly short future. I was the one contemplating his suffering and debility. How was I going to be able to take care of him if I got sicker? What if we lost his income completely? What were we going to do when his COBRA insurance coverage runs out this December, but he doesn't turn 65 until next April? And most of all, how could I go on if cancer took him before it took me? We had a ten-day wait before he could see the ENT. Unable to sleep, Steve stayed up late, playing Free Cell endlessly. I recalled my sleepless nights, playing Tetris when I was awaiting news of the extent of my breast cancer when first diagnosed. This time, I lay in bed and prayed, waiting for him finally to come to bed, knowing that he needed time and space to grapple with his fear and what might lie ahead. One evening, I sat at this computer, passing time, while he played guitar and sang every love song he'd ever sung to me or with me, out in the living room by himself. What if the mass involved the larynx and he couldn't speak or sing again? My shirt was soaked with my tears after an hour of crying that just wouldn't stop. How much I love him and would miss him if he died. I didn't want him to suffer. I was so scared, for both of us. As the days passed, Steve gathered information from the Internet, sometimes spooking himself with survival statistics and the range of treatments for head and neck cancers. "I won't have my jaw removed," he said to me one night. "Honey," I reminded him, "you don't have a mouth cancer, if you have cancer at all. That won't be a treatment option, so put that out of your mind." Steve kept busy, filling his days with work concerns but still taking a small dose of Ativan to help his swallowing and to lessen his anxiety. He seemed able to stay with the little bit we knew and not run down the road toward death as an outcome. Finally, the day came when we went to see the ENT. Sitting in the waiting room, I could feel Steve's tension. I was tense and frightened, too. We really didn't know what could even be discovered that day. A man in a wheelchair coughed noisily and wetly through his tracheotomy at regular intervals. He held a green washcloth in his hand and rested his head wearily in his other hand. Steve leaned over to me and whispered, "I know you don't want to hear this, but if it comes to that as a permanent solution, I don't think I could do it." "Don't go there, Steve. We don't know anything yet." After a long wait in several staging areas, we were led into an exam room. The doctor entered after about ten minutes of more anxious waiting. He reviewed Steve's history and symptoms and then said he wanted to look down in his throat. Now, I don't know about you, but for me the sight of unfamiliar medical instruments can really rev up my fear. Steve has a terrible fear of choking and I could see his eyes grow wide as the doctor retrieved a black, snaky looking thing. The doctor sprayed some kind of local anesthesic into Steve's nose and guided a flexible scope about the diameter of a ballpoint pen through Steve's nose and down into the throat. Steve was still a little bit "gaggy" and couldn't cooperate completely, plus I could see his hands tightly gripping the armrests of the exam chair in fear. The doctor backed out and gave Steve another kind of local anesthetic, directly to the throat, cautioning him that it would be difficult to swallow for about a half hour. Oh, great! But this time, as the doctor advanced the scope again, Steve seemed less resistant and was able to say "eeee" so that the doctor could see the larynx, too. After the exam, the doctor stood up and said, "Well, I've been down there twice now and looked thoroughly, and I don't see any abnormalities on any surface of the throat." We looked at him with a mixture of hope, relief, and bafflement. He went on, "I see a lot of throat cancer in this practice and I do not see anything. To be certain, we've got two more options. I'll order a CT of the head and neck and then, if we need to, we could always do a scope under general anesthesia." So, he ordered the CT and we left the office, with a follow-up appointment set. Steve was still unsettled, trying to reconcile his symptoms and the barium swallow reading with this doctor's findings. "I'm waiting for the CT," he said.
Flip Side, Part II - June 19, 2008 I accompanied Steve to his CT of the head and neck. We opted for the satellite of our regular hospital, north of the river. He had been through CT's in the past, so the procedure itself didn't hold much fear for him, but we both faced this diagnostic test with a bit of fatalism, I think, still prepared for bad news. He had the CT on a Thursday and by the next Tuesday, we were both feeling very anxious for the results. For some reason (and I think it verges on the inhumane), the doctor's office had a message on the electronic routing voice message that said basically not to bother asking about CT results if less than 14 days had passed since your test. Fourteen days?! That's an awful lot more sleepless nights. We love this doctor, but I hate that policy. That Tuesday morning, we got an unexpected call from the office of another ENT to whom Steve had been originally referred (we had decided to go to a different one, whom we had heard had more experience with head and neck cancers). It was a very nice, concerned phone call, first from his nurse but then a second call from the doctor himself, trying to be sure that Steve was being followed up. This freaked him out completely. Immediately, Steve assumed that the doctor had somehow gotten the CT report and knew something awful. I pointed out to him that nowhere on his admitting papers for the CT was this other ENT even mentioned and that I believed that the doctor was just aware that we had cancelled the appointment and was being responsible to be sure that Steve was being seen somewhere, since the barium swallow had been the cause for the initial referral. But given Steve's anxiety (and my own impatience awaiting results, too), I called his ENT's office and left a message for the nurse, explaining that we were aware of their policy, but that our anxiety was heightened by these two phone calls. We had to leave to see my local oncologist before the nurse called back. While at Dr. Johnson's, we shared Steve's recent news with him and let him read the barium swallow report. He was reassuring and seemed to put a lot of faith in the ENT's physical exam, but also said that if the CT held bad news, he would be immediately available to us. When we got home, the nurse soon called with the CT results. They were completely normal and negative for any tumors! I was greatly relieved, but I could see Steve having trouble moving away from his mental preparation for disaster. Boy! Do I ever know that feeling! When you've walked right up to the abyss and looked hard into the darkness and contemplated the long fall into it, it's hard to pull back and trust good news. I was a little worried about him, but also said to him, "Steve, you've got to pursue this as far as you need to in order to be reassured and to get on with life. If you intuitively still feel like something serious is wrong, do what you need, to make the doctors prove you wrong." As we turned out the lights that night to go to sleep, nested like spoons, I heard him sigh and say, "Thank God, I don't have cancer." I felt relief that he could sink into that with some faith and belief. We'll still keep an appointment with the ENT to discuss the CT results and talk more about why Steve continues to have some difficulty swallowing. He's doing better with it, but is anxious about his health for the first time in all the years I've known him. Maybe it's the reality of aging and dying slamming him hard for the first time. It's a tough one and the most fundamental question I suppose that we wrestle with. It's abstract at this in-between age unless a health crisis throws it into high relief. We've come through this with a deeper appreciation
of each other and what each of us has faced during my illness.
I know that I cherish even more deeply Steve's tender care and
advocacy. He has set the bar high for me. If it's ever my turn
to care for him, I hope that I can rise to the challenge with
the love and selflessness he has shown me.
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