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.

ANOTHER WEEK OF BLESSINGS TO ENJOY

There’s seldom a dull moment around here. In fact, there have been few quiet moments around here since Thanksgiving. We have really needed the kids to be available, and we have enjoyed all the other company, but I think we are just about ready to succumb to the balance of winter and spend some of the coming weeks trying to get in a little hibernation time.

Last Sunday we were especially blessed when Betty’s sister-in-law Billie Jo drove up from California to visit. With her were daughter Rene (from the same farmstead) and her son Joey (from Florida). The former is director for a group of public school libraries and the latter is a concierge who manages large events in the hospitality industry. The time spent with them exploring and renewing family history and happy memories was delightful and a great boost for Betty. David and his girls were here too while Paige was running a half-marathon in Phoenix, and Geoffrey arrived after a lengthy delay in Seattle (he was traveling on a stand-by ticket).

Altogether, most of the home meals were designed around thirteen of us, counting the Patty’s family. We have always been proud that our dining room table seats thirteen uncomfortably, and indeed it did again, although a separate card table was in place for the “youth group”. With so many experienced cooks, we did not lack for good ideas for menus; what we seem to lack is an adequate supply of dishwashers and clean-up specialists.

Among the things I have enjoyed with all the visitors are the interactions of individuals with Betty and the broad range of topics that have come up during each visit. Each person brings a unique set of memories to review and a customized package of interests and knowledge. In some ways, these past few months have seemed to open a host of new subjects both in the scope of their subject matter and in the depth or thoroughness of the conversational coverage. Family members always bring family matters to share and explore, whether in terms of history or of current events. Friends often offer the topics which currently occupy their thinking or items ABOUT which they have received recent new information or those activities most recent in their own experiences. Collectively, this has resulted in a panoply of interesting discussions and curious chats. Like I said, “There’s seldom a dull moment around here.”

Because of a lengthy period of emesis and discomfort recently, a modification was made in Betty’s daily medication routine – an intricate tapestry of pills and such for anti-nausea, pain control, and management of Parkinson’s symptoms. Currently, if she accepts everything on schedule, Betty takes from one to seven pills about thirteen different times a day. Wouldn’t you get tired of that routine? Well, so does she (and so does her pill-pusher). Anyway, the change has been beneficial and she has had few cases of “lunch-loss” since late last week. We still recognize the need for plenty of rest and making allowances for three or four naps, morning and afternoon, to help maintain the level of energy required each day. Please understand, we have nothing to complain about since we are well into the fifth month since the confirmed diagnosis of cancer, and Betty is still able to get up and move (with difficulty) from room to room. She is never negative about her lot, and simply does not whine or gripe about the situation. Instead, her calmness and serenity and sense of peace continues to build up the rest of us and give us reason to maintain the high level of hope we are holding onto in this difficult circumstance.

Surely God is good, and loving, and compassionate, and His mercies endure forever.

BALANCING THE ROUTINE WITH THE SUBLIME

While much of the time passes quickly, it seems many days are quite a bit the same. We have a set of routines that frame our days into the morning activities, and afternoons, and evenings. When we both are awake and up, I try to help my brain to awaken by reading the local newspaper; sadly, I can’t always find enough interesting material to do the job, but just getting it from the porch area and bringing it to the table and fixing a cup of tea, and going through the motions is a beginning of sorts. Meanwhile, Betty usually rises and dresses and we discuss what (if anything) she thinks she could accept (and retain) for her breakfast; it could be egg and toast, Cream of Wheat, a personally tailored smoothie, or some other possibility. After I fix whatever it is, I usually tidy up the bedroom by making the bed, putting away clothing and other items from the previous day and night, and prepare the first of her doses of pills for the day. Then the game becomes, will the food and pills “keep” long enough to do her some medical and nutritional good. Recently the score has averaged about 50/50.

The rest of Betty’s morning may include some on-line checks of real e-mail and sorting through the junk mail for good stuff that was misclassified. She spends some of the mornings sorting and re-reading her many cards and lots of love, encouragement and she punctuates the morning with napping. I generally use that time to tidy up around the house and getting things back in their places. When the mid-day begins, it’s another round of trying to guess what snack or mini-meal might settle in and not end up in a pink plastic tub. If there is a jig-saw puzzle spread out, we might work a bit on it until the next nap calls. We try to time things around the pill schedule, but often have to be a little flexible since some of the day’s problems pay no attention to clocks and schedules. When the afternoon nap is underway, I have been dividing my days between reading and just succumbing to the siesta myself. A cozy blanket and a bit of quiet and an hour pressing my pillow are becoming more frequent and more appreciated as the days slowly pass by. Some days we spend a portion of this naptime just cuddling and talking and that’s some of our most precious time together. Other special times are when Patty and/or her girls stop by almost every day to check on us.

The evenings are mostly alike, and usually contain evening meals, if any, and medications, and (depending on the day) a little television. We work our way through the favorite news programming for a couple of hours before “Jeopardy” comes on at 7:00, after which we selectively watch whatever we favor and talk and reflect on the day and the phone calls and on upcoming plans. This weekend David comes with his girls (late Friday through Monday), Betty’s sister-in-law and her two kids are driving up from central California to spend at least Sunday with us, and Geoffrey arrives sometime Sunday to spend another week helping to spoil “The Mom”. When Edwin and the girls join us we will have a house-load of thirteen visiting and sharing the entertainment. Should be a fine time. [ BTW: Patty is in Texas for a job related, church—planting staff meeting, and Paige is in Phoenix running a half-marathon.]

One ongoing experience we have been enjoying fairly frequently has been the face-to-face visits of friends from present and past. We have had several couples we knew in various places in Alaska make special efforts to come to Vancouver and check on us, often bringing gifts and always packing wonderful shared memories. Individuals who have touched our lives in widely varying ways have come to spend time expressing their love and concerns. One couple was even married in our back yard – years ago, of course. Friends of our kids, now friends of ours, have planned special trips from their distant homes to ours just to bring encouragement and their personal expressions of concern. In addition to our own kids (both the local crew and those who live elsewhere) we have appreciated our grandsons’ other grandmother who always brings an aura of joy and delight with her. Many of the members of the congregation we have attended here for twenty-four years have dropped by to express their love and share their prayers. Many times they have brought meals or thoughtful little gifts that have lifted our spirits. And more often that I could count, the folk in our mid-week home Bible Study group have filled in serving as “babysitters” and pitching in with domestic chores to make the work-load around here lighter and less onerous. These are hearts and hands of love which are eager to return the blessings they have received from Betty over the years in small but useful acts of caring and sharing. Believe me, their thoughts and efforts are deeply appreciated.

The routines described earlier are easily forgotten and o’er shadowed by the visitation of good and Godly people who have taken the time to be a part of our recent journey. These thoughtful contacts have indeed lightened our days and given us much to reflect upon and cherish. We are continuing to work these visits into our schedule, although as Betty needs more rest and suffers increasing bouts of “nausea” and all that brings, we do appreciate folk calling ahead to check for suggestions as to the more appropriate times to stop by. As long as we are able we hope to continue to be nourished and sustained by the outpouring of love from friends from all the eras of our marriage and travels. Y’all Come, Hear?

BEGINNING A NEW YEAR WITH BIRTHDAY WEEK

A couple of weeks ago we thought Betty would have emesis every day, but after a string of five tough afternoons, it subsided for a brief time; Then it was back for three days, but as of Sunday (the 8th), we are again “urps-free” since Friday. I know it may seem strange to measure good days and bad by the need or freedom from “pink plastic tubs”, but that’s exactly where we are when the primary characteristic of this bone metastasized cancer is doing its deadly damage. Still, after an early morning which didn’t start out too promising, Betty rallied and we were able to attend morning worship to begin this week. On the strength of that time with God in company with our church family, we will make it until Wednesday evening when our small, home-study Bible group will gather here and we will again be refreshed and nourished for the balance of the week.

Last Thursday morning was given to receiving the monthly infusion of Palmidronate Disodium, a medication designed to capture and fix calcium in her bones in hopes of forestalling any quick depletion of this vital material and to possibly minimize bone fractures or outright breaks which would almost certainly hasten her demise. That outing was extra hard on her since it took more than four hours instead of the more reasonable hour and a half. It took over a day to recover from the effort and stress. Wherever we are and especially at home, we are being extra careful to avoid falling or attempting any other physical activity which might endanger her bones since they are now at great and increasing hazard. Part of this protective mode calls for long sessions just sitting in the (plush and overstuffed) “Dream Chair” or taking ever more frequent naps throughout the days and evenings. As always, the favorite pastime is reading your cards and letters, folks, and visiting or ministering to others by telephone.

Last week we made it to and through our mutual birthdays with many cards, greetings, calls, and some really thoughtful gifts. The 3rd (hers), the 4th (ours) and the 5th (mine) were celebrated and shared and thoroughly enjoyed. David came over from Kennewick for Friday and Saturday and as always is great company. In his usual helpful way, he took on some house and cleaning projects which were appreciated, provided some fine company, but best of all presented us with the product of some special labors he has been conjuring over since late November. David used many (most?) of the 528 photos he took at the family photo session at Bonneville Hot Springs Resort and Spa on November 26th to create a DVD movie of each of our fifteen individual family members in family groupings and all together in the pictures that include everyone, warts, winks, blinks and all. It is a masterpiece of art, photography, humor, and insight set to Muppet Music and other tunes. Even the “shut-eye" shots were included as the song “Don’t Blink” plays and explains how quickly time passes as kids grow up and marry and have their own families and it is all going by so rapidly one shouldn’t “Blink” for fear of missing out on so much. To match this talented gift David also presented us with a book he based on Psalm 23 and illustrated with his own aerial photographs; it is gorgeous!

David and his Mom spent more than eight uninterrupted hours together Friday night while Patty took me to the River City Bluegrass Festival to see some of the top-rated musicians in that finest of American Music genres. We were in or near the front rows at three of the individual concerts given by some of the greatest talents of today. Although we heard perhaps fifty or sixty different songs by five or more “sets” of artists, I have stored away in mind and heart several specific performances which were completely amazing to experience “up close and personal”. The most incredible example was played by the fiddler for the Steep Canyon Rangers, Nicky Sanders, whose rendition of “The Orange Blossom Special”, the classic fiddlers train song, I have heard hundreds of times, and many times live. This stunning performance outshined them all by far! Even recalling it now to mention it in this blog has raised my pulse, caused me to choke up, and filled my eyes with tears. Well, we also enjoyed an up-and-coming young group, the Bluegrass Regulators, a remarkable demonstration by Tommy Emmanuel, an extraordinary guitarist, and a rollicking round of more traditional Bluegrass by the Travelin McCourys, a top group Internationally. If you follow Bluegrass (or know how to Google) you might appreciate how special and exciting this birthday outing was for me.

Betty and I continue to appreciate and remark upon your expressions of love and concern which are a comfort and a solace to us. We will have additional family coming next weekend and beyond, so we are not without activity nor are we pining away alone at home. Life, even when severely threatened, is to be lived and shared and enjoyed. It is full of blessings, everyone a welcome experience or a gift of delight, and we are thriving upon the friendships we have gathered over the years while we relish the days which remain for Betty and me to share together with family and with you.