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 July 2008 Post Book Essays Miracles and Grace - July 27, 2008 Getting My Head Around It - July 19, 2008 Miracles and Grace - July 27, 2008 We've had an unusual experience recently. Perhaps its being unusual is not entirely true, given the unlikely outcomes of medical crises for me during the past year. Let's just say that we're keeping our eyes open to the improbable once again and finding ourselves awash in gratitude for the unexplained. As you may remember, my husband Steve has been experiencing difficulty swallowing that has persisted for more than six months. In May, when he had a barium swallow, the films showed a mass roughly the size of a walnut in his throat, sending us running to the ENT and driving us to our knees in fear and prayer for assistance. Steve had all the risk factors for throat cancer: over 60, male, former smoker, plenty of stress, not-so-great nutrition a good part of his life When we saw the ear, nose and throat doctor, two in-office scope exams all the way down the throat and into the vocal chords showed no abnormalities. This was puzzling in light of the X-ray findings. A follow-up CT of the head and neck was also negative for any masses. Because Steve's swallowing issues have continued, the ENT ordered another barium swallow, this time in the presence of a speech pathologist, and using barium-laced materials of various consistencies, to see if it were possible to localize the problem. The night before he was to have this diagnostic test, Steve said, "I'm not going tomorrow. I know you're going to be mad with me, but I'm not doing it. I'm afraid I'll choke. I'm afraid they won't take my tendency to choke seriously." After some discussion, he agreed reluctantly to go and at least talk to the speech therapist about exactly what was involved. He could talk about his choking problem (a long-standing tendency since he was in his teens) and about his fears. If he wasn't reassured that he would be looked after safely and to his satisfaction, he could still refuse to go on with the test. The next morning, we rode to the hospital, talking little. I knew that he was anxious. When we met the speech pathologists (there were two), Steve excused himself to the restroom and I blurted out everything to them while he was in the bathroom. I just didn't know if he was able to overcome his fear enough at that point to really advocate for himself. He had given me permission to come back with him and to add my two cents as needed. Well, I spent the full dollar while he was in the john. When he came back, I told him that I'd been filling them in and he continued, talking about his fear of choking especially. The speech pathologist was reassuring, telling Steve that part of his job was to determine if people who had experienced a stroke were ready to swallow liquid, so he takes choking very seriously. He showed Steve the four things he'd be asked to swallow, ranging from liquid about the consistency of milk to pudding and ending with a small bit of cracker smeared with some cream-cheesy barium stuff. I was excused from the room so that the X-rays could be taken without exposing me to them. I was called back in the room in about 10 minutes for the preliminary report. First of all, there were definitely a couple of identifiable problems. Steve's epiglottis doesn't close completely, allowing a little trickle of liquid to pool at the beginning of the windpipe. Over the years, he's instinctively made an accommodation for this, swallowing each mouthful twice. On the second swallow, the liquid ejects back into the throat and down the esophagus, at least most of the time. When it doesn't is when he gets a frightening choke with spasm and difficulty getting air. The other problem is that he does not effectively propel the food from the back of his tongue into the throat. There is evidence that the muscle at the back of the tongue has atrophied to some degree. The seriousness and significance of this remains as yet unknown. He will see a neurologist for further evaluation in a few weeks. The unexpected part of the day was that the radiologist who did the first barium swallow saw Steve's name on the schedule and came in. He was apparently quite concerned and upset, wondering why Steve was still having barium swallows when by now he should be in treatment for the mass in the throat the doctor had seen back in May. When Steve explained that the ENT doctor had scoped him twice and saw nothing and then a follow-up CT of the head and neck had been negative for any masses, the radiologist kept shaking his head and saying, "Something's just not right here!" He had Steve stay a few extra minutes and drink more barium, turning slowly 360 degrees as he filmed Steve from every possible angle. That afternoon, the speech pathologist called back. I answered the phone. "Mrs. Hampton, I have a few things I want to talk about. I will talk to Mr. Hampton after you, but first of all, I want you to know that Dr. Mills and I both went back and re-read the films from May and compared them to today's films. Mrs. Hampton, there was unquestionably a mass present in May and it is not there today." I told him that we had been so sure ourselves that Steve had throat cancer, given his history and risks. We had asked for a great deal of prayer on Steve's behalf, given our fear for his health. Perhaps that was the explanation. He also asked if Steve might ever have had an injury to the neck, thinking about how his epiglottis malfunctioned. I gave him several possibilities, including the fact that Steve was a wrestling champion in high school and college. Then I turned the phone over to Steve. When he got off the phone, he was teary. "The speech pathologist used the word 'miracle' three times when he talked to me," Steve said. "He said that he hesitated to even use the word, but there just wasn't any other word for the changes in the X-rays since May." He looked at me, eyes brimming. "Why, Debbi?" "Honey, we don't know why. That's what grace is. Just be grateful." Gratitude and wonderment seem to be the natural and appropriate responses, and we sure felt both. And "miracle" comes from the word about experiencing wonder. When I look back at the Latin, I see the root that is also used in the Spanish word for "to look:" mirar. Perhaps these things happen around us all the time and we forget to look. While I'm not a Christian Scientist, I was interested in the definition of miracle that comes from their beliefs: "a divinely natural phenomenon experienced humanly as the fulfillment of spiritual law." There are spiritual consequences of prayer and care and love and concern that have effect in the physical world. Our experience was just overwhelmingly obvious. Even we couldn't miss this one. I'm reminded of Psalm 98: O sing unto the Lord a new song; for he hath done marvellous things. How many unexpected new songs we have had
the chance to sing this year! And the word "grace"
goes all the way back to the Sanskrit for "he praises."
And we do praise this reprieve and all the love that is being
showered on Steve. Whatever comes, we will try to remember to
praise and seek the grace.
Getting My Head Around It - July 19, 2008 While we've been preoccupied with Steve's swallowing problems and the medical scavenger hunt that has gone with that, quiet good things have been happening inside me. The experimental drug that I've been taking since last November in a Phase 1 clinical trial has been working. About three weeks ago, Steve and Hollin both shook their heads and within hours of each other commented almost identically to me, "Just think! Four months ago, you were dying!" In the past, when I've steeled myself for bad news and dire outcomes, I have found it hard to buy into and trust good news. Things were different in those days. I had an active metastatic process going on, but it had not yet progressed to a point that my life was in imminent danger. The specter of death was in the next county, not lying in the bed with me. To trust to good news was like denying that an escapee from the penitentiary who was serving a sentence for murder was no longer a threat, so don't worry he might still be out there, but you don't have to lock the doors any more. The fear and possibility of getting much sicker was real, but by comparison, distant and somewhat abstract. This past year has been full of close encounters with death. My brushes up against the Saran-Wrap barrier between this world and the next have been numerous and real. Three hospitalizations have taken me to the edge, with the knowledge and full realization in my soul and my gut that I may not make it this time. I have spent a lot of emotional coinage in pressing up against the place where those worlds meet and expecting to step through. All three times that I left the hospital after having been close to dying, pulling back from that place and recommitting to physical survival has been challenging. I found myself disconnected from this world, anxious and distracted, even to the point that eating was not important and once, even repugnant. It took intention to decide truly body, mind, and spirit to be here and rebuild my strength. Since I got out of the hospital in early March after my third big crisis, I have slowly and steadily invested in my survival again. I've regained weight. I've re-engaged socially as my limited energy allows. I've accepted my treatments with decreasing dread and growing acceptance. I still have cancerous lymph nodes in my chest and some chest wall tumors. A recent PET scan showed the peppering of very small metastatic tumors on the lining of my lungs on the right. I still have some fluid at the base of my chest cavity on that side and a small amount of fluid around my heart. This is nothing to dismiss casually but again, compared to where I was four or five months ago, this is a dramatic improvement. At each CT scan (which I have every eight weeks now), the tumors continue to respond to this experimental drug, shrinking and in some cases disappearing. My most recent tumor markers are actually in the normal range, for the first time in over a year and a half. The treatments are working at pushing back the immediately life-threatening stuff and holding things at bay. Dr. Burris is willing to continue to treat me for up to a year with this drug. That would be November. For the first time in over a year, I'm able to look ahead four months with a handful of hope. The will to live has gotten me through along with good medicine, incredible love and support of family and friends, and many prayers mine and those of so many others. Sometimes my own were as childlike as "Oh, God, take my hand." Now, I'm not naïve. I've seen how fast things can go south. But, given that all the stars are aligning for the first time in several years, I have to do something I'm kind of rusty at. I'm contemplating what it means to commit not just to survival, but to commit actively to life again. Part of the challenge is acceptance that life is very different now. My stamina is poor. After chest tubes and chest surgeries over the past year, I look like I've been in a machete fight! While I can now walk on a flat surface without panting, any incline or stairs immediately move me into shortness of breath. I don't think that will ever change. While I can care for myself again, I still can't effectively care for the things around me. It takes me four or five days to do things that I used to do in a morning. There are some things that I just can't do at all, like heavy housecleaning. I can no longer work and haven't been able to for nearly four years. I just do not have the strength to get through a day without periods of rest and often sleep. Long ago, I had to reckon with turning loose of defining my worth by what I do. That was a hard one to dissect away. I had old, tough scars that bound that notion to me. The powerful truth about my reality that I am a soul, not just a body, and that it is enough to be finally cut that away with laser-like efficacy. So what does committing to life mean now? I'm still trying to figure that out, but I think it means being willing to step as fully back into life as my persistent limitations let me. It means going on and making plans and goals that are beyond the four months from here until I finish this treatment. It means trusting myself and filling up again the space inside me that I had made as I peeled myself away from this world in those months of severe illness and weakness. It means beginning to embrace again my identity beyond cancer. It means reminding myself that I am a vessel and although for a long time cancer has filled it up, I can now put other things in this vessel. Like stones displace water in a vase, I can put other things in that will push the cancer out of the way. I can put other things in and make cancer share some space. Maybe even some flowers.
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