EXPLAINING A MAJOR DECISION

Last August and September have become foggy distant memories. So much happened back then that we felt we were engulfed in a blizzard of medical tests and appointments. Or perhaps we felt like a bit of flotsam hurtling down the rapids of a steep chasm and headed for the brink of a huge precipice. There were multiple doctors and technicians at multiple medical facilities on multiple days and we endured countless tests, and lab work and CAT Scans, MRIs, PET Scans, major surgeries, radiation, and an almost infinite series of blood draws that often resulted in ugly bruises.

Although we had assumed the worst based on bits and pieces gleaned here and there the ultimate diagnosis and its related phenomena, endometrial (uterine) cancer with metastases to her bones, was gently explained to us by “Dr. R”, her surgical oncologist as being terminal, and from that very moment Betty explained to him why she would not be participating in the conventional (and usually fruitless) chemotherapies or other aggressive attempts to overtake the advanced progression of her disease. Once the reasoning behind her decision was understood by this primary care cancer specialist, he only urged Betty to consider a monthly infusion of a medication which seems to help fix the body’s calcium in the bones to help prevent breaks and fractures as long as possible. Next week she will take the fifth infusion of this medication, and thus far has had no disabling mechanical bone trauma.

Just as a review to those readers who may have missed the primary factors in Betty’s decision, let me restate the background of that significant conclusion. Betty was diagnosed in 1990 with Parkinson’s Disease and subsequently has been involved in not only in care for her personal variation of that malady but has generously participated in research projects searching for an understand of PD that might lead to better treatments or to an eventual cure for this awful neurological movement disorder. Early on she formed and encouraged a support group designed to benefit and enable other “young onset” Parkinson patients in coping with their diagnosis and its effects upon their lives, and with physically maintaining as much of one’s physical capabilities as possible. Together we have attend meetings, seminars, and annual symposiums with the aims of staying informed and of urging others to keep their own level of knowledge of the disease current.

In Betty’s mind, I suppose, she has always had a clear understanding of the probable and usual outcome of Parkinson’s Disease upon an individual at life’s end and has always desired to avoid the horrible effects of that lingering kind of purgatory. Knowing that has made it easier for me to accept her decision to skip trying to treat and defeat cancer which is at best a struggle most unlikely to succeed and one which is fraught with much violent illness as the chemo drugs destroy the immune system. Choosing to accept the cancer and live out the remaining time with quality and style under the palliative care of Hospice was for her a simple decision. Now, four and a half months later, I have not detected one moment of doubt or regret or second-guessing related to the initial plan. She did not hesitate then, nor does she question her choice now. In large part this is why Betty is calm and serene about this phase of her life and is able to convey that peace of mind and spirit to the host of family and friends who have flocked to her side in person or in cards and letters and calls of love and support.

It should not be surprising to any who are paying attention that Betty is doing remarkably better than was expected at first. We collect these expectations from the stories and experiences we all have heard concerning dying, especially from a fearful illness like cancer. Many individuals do not live long after being placed in Hospice care and we tend to think of it as a last ditch effort to manage the very last days with comfort. Indeed, that is the goal and the desire of the remarkable individuals who serve in this special medical ministry. But sometimes despite the doctors best understanding, an individual surpasses expectations and excels. Whether this is the result of good care or of a strong constitution or of the depth of a person’s will and determination we can not say with certainty. We believe it is primarily God’s compassionate answer to ceaseless and fervent prayer. That Betty continues to do well is powerful testimony to something far more powerful than the results of our daily caregiving. Although she eats very little and sleeps quite a lot, she is still able to get from room to room (with difficulty) and enjoy her company and the precious gifts of her children and others. We continue to enjoy with her every minute of this window of life. Consider following her example of cherishing family and spreading joy to whomever may be nearby. The benefits are warm and uplifting. The wonderful memories formed during the past four and a half months are precious and will be cherished.

About that analogy of hurtling over the precipice ... Well, we did, and now we are in that quiet period of soaring free, sort of suspended in mid-air. In many ways it is a moment of calm and wonder and the passing of time seems suspended for now. Our perception of all that is around us is both intense and keenly focused, and we feel as though we are being held aloft by angel's wings. I know it will soon pass, and reality will be faced, but we are enjoying this sensation of being upheld by so many loved ones in so many thoughtful, prayerful ways. We have looked back at nearly 48 years of togetherness, but the view of what lies ahead is what fascinates us now. Indeed, the best is yet to come.

READER ALERT: Check out David’s video of our family photos by going to Patty’s blog. Her address is www.clayinkpot.blogspot.com. David also posted it on YouTube under the title “Five People Become Fifteen”, but I don’t know how to tell you how to access it there. This little film is receiving rave reviews, and should you come to visit us, viewing it with Betty is mandatory. You won’t be disappointed.