This letter and the ones that follow are to the forty-one people whom either Peggy, or I, or both of us, want to tell about today’s surgery, and I will also post it to my blog.
It’s now 10:30, and Peggy was taken to surgery a half-hour ago. Her 384-bed hospital was running behind because Peace Health Sacred Heart Hospital (Peace Health is a Catholic run chain that owns several Northwestern hospitals of which Sacred Heart is but one) laid-off 1% of its nursing staff this week (for the well-being of its patients, it claimed), and nurses are calling in sick to protest.
Peggy started working as a nurse at Sacred Heart (as it was then called) in 1986, and retired 26 years later. Then, as now, nurses called their employer The Sacred Wallet. She became so disgusted with hospital management that she couldn’t wait to retire, and by the time she did, she had lost all respect for management’s honesty and goodwill. However, the hospital’s staff isn’t its management, and she is being treated very well by the people who matter.
Peggy has crummy veins, IV-wise, so she won’t tell her nurse that she too is a nurse until after he or she gets her IV started, because every time she has, she had to be stuck repeatedly. Today, her IV had to be installed in her elbow, so Jon, her anesthesiologist, promised to move it during surgery so she can bend her arm when she wakes up.
Her five-hour surgery is called a Distal Pancreatectomy Splenectomy, and Jon said that, after that much anesthesia, she won’t remember a thing for the rest of the day. Her main concern about surgery involved her objection to the use of a robot, so she had previously asked Diego, her surgeon, if he really had to use one, and he explained that robots don’t have tremors. This failed to allay her fears
Neither of us could sleep last night, yet I have to be alert to take Diego’s call or calls, so I’ve been drinking cup after cup of coffee and taking some Ritalin that Peggy was prescribed for chemo-related fatigue but refuses to use. Oddly, given that she’s married to someone who has a casual attitude toward drugs and has been taking narcotics legally for 15-years, Peggy is very anti-drug. In fact, she tried to avoid being put to sleep for surgery, but was denied that option.
I envy Peggy her bravery. Of course, it could be that if I were in her position, I too would be brave. I don’t say this to minimize the tragedy of pancreatic cancer but to say that I had a thousand times over rather be the one who has it. I’m her husband, and I’m supposed to protect her, but I can’t, and that makes me miserable. However, I can be a lion in her defense, and I am too, so much so that she had to reign me in last summer when I became too aggressive in dealing with her caregivers.
It’s now 10:45, and I just got a text saying that the procedure had begun. I don’t know why they’re just now starting, but the delay must have been hard on Peggy who would have been lying on a hard table in a cold room. Warm patients have better surgical results, so I hope she has been demanding warm blankets.
Now comes the waiting and the hoping that Diego won’t call for another five hours because if he calls sooner, it will probably mean that when he blew her belly up with gas, he found that the cancer had spread to other organs in which case he will sew her up, and she and will be very, very sad.
Until her oncologist praised me for going to her every appointment, it hadn’t occurred to me that I could have stayed home, not that I would have because, since her diagnosis, our lives have become so intertwined that I have no life of my own. I eat, sleep, and breathe her cancer, and I’m hell’s own googler and doctor questioner when it comes to seeking information. My every thought is either of Peggy, or it will soon return to Peggy. I have her medical power of attorney. I have her advance directive. I call her doctors by their first names because they’re her employees, not her betters, and I’m as knowledgeable about her condition and treatment as age and misery will allow.
My 71-year-old sister, Gay, has smoked since her teens and done hard drugs since her twenties. Two weeks ago, she got so high on meth one bitterly cold Mississippi night that she visited her neighbors naked. I don’t know if the meth was to blame, but a short time later, she had a severe stroke and is now in a hospital room all by herself awaiting death. Gay’s dead husband’s brother and Gay’s obviously high housemate (neither of whom I had met) have been courteous and good about keeping me updated. The best case scenario is that Gay won’t linger because I’ve seen what awaits people who survive devastating strokes. I feel like I should stop writing to you and call her doctor because I am, after all, her nearest relative, but I’m at my limit at to what I can endure. I’m sorry, sister.
Peggy’s last words to me were, “I love you.” I’ve heard her say those words thousands of times, but never before had I wondered if I would hear them again. Even when she climbed high mountains on which deaths were frequent, I believed that she would be careful, that her companions were trustworthy, and that the odds were good that she would come down alive. Now, I don’t know what the odds are. I just know that fear and sadness have dominated our lives since May.
Speaking of high mountains, after all she endured, she almost died on 762-foot Diamond Head in Hawaii because she climbed it on a hot day an hour after a dehydrating plane ride from Oregon. She got most of the way to the top before she collapsed from the heat and had to be airlifted to a hospital. That experience combined with what she later told me about the risks she and Walt, her primary climbing partner, took on high mountains convinced me that my confidence in her prudence and her companion had been misplaced. Summit fever is a sometimes fatal psychological problem that afflicts people who should turn back but don’t, and Peggy had it so bad on Diamond Head that strangers who watched her vomit stepped in to physically restrain her when she insisted upon continuing upwards.
I used to think that doctors had a special way of giving people bad news so that it wouldn’t seem bad beyond what they could endure, but they don’t. Her oncologist’s first words were, “It would be reasonable for you to choose palliative care only, in which case you will probably die in six to eight months.” That was nine months ago, and while the chemo has kept her alive, it has made her perpetually sick, tired, nauseated, and chemo-brained, plus it has made her food tasteless. Worse yet, chemo drugs invariably stop working, which is why only a tiny fraction of one percent of pancreatic cancer sufferers are alive five years after diagnosis.
Today’s surgery was originally scheduled for January 27th, but because her doctor’s previous surgery took hours longer than expected, he rescheduled her surgery even as she lay in pre-surgery room number 13 after a day of fasting and bowel prep, plus getting out of bed hours early and enduring four IV sticks. Today, is Friday the 13th, and she was again assigned to room number 13. My friend, Bob, tells me that thirteen is considered a lucky number in some places just as black cats are considered lucky in the British Isles. One can but hope.
As most of you know, Peggy is well-known among American clothing button collectors, and she stayed up late last night putting together one last pre-surgery button card. My first childhood book was about a squirrel who so filled his house with nuts that he had no place left to eat, sleep, or sit, and damned if that book didn’t predict my marriage. You wouldn’t think that a woman could fill her house with something as small as buttons, but she’s on her way, so I can but celebrate the friends she has made and the joy she has found in these tiny works of love and artistry. In fact, her primary support during this ordeal has come from her fellow button collectors who (unlike a few relatives whom I had mistakenly imagined would constitute our primary support) continue to text, call, and send cards and gifts nine months after her diagnosis. I love you, dear button collectors, and I thank you with all my heart for your goodness to your friend, my wife. One never knows how much her life matters until such a fate as pancreatic cancer brings it to an abrupt halt and replaces it with a seemingly endless nightmare.
Still no news, and that is good because no news means that the cancer hasn't spread to nearby organs.
I'll be in touch,
Lowell
Friday, 2:25 p.m. Pacific Time
An Update Regarding Peggy's Surgery
When we got home at 3:30, I called Laura to ask that she use whatever influence she has to get the surgery rescheduled as soon as possible. She said that Peggy’s surgeon, Diego Muilenburg, had already promised to do the surgery ASAP, by which he meant late this week or early next week. When I said that Diego’s “ASAP” in December had meant six weeks, and I was afraid that we might face another long delay, Laura repeated what she had already said. She did not seem pleased to hear from me.
Diego called yesterday evening at 6:30 and gave Peggy a tentative date of February 13th for her surgery and said that he wasn’t at all sure if he could do it then because he didn’t know if a robot would be available. I immediately wrote to Peggy’s oncologist, and asked if he could find her a surgeon who could operate sooner. His office called this morning and said he could not. Diego’s office also called this morning and confirmed the February 13th surgery date.
Peggy is Cleared for Surgery
Peggy’s oncologist called on Sunday and again on Monday (I never stop marveling at that man’s dedication) to discuss her situation in some detail, but I’m going to cut to the chase by saying that Friday’s PET-Scan showed no new tumors. This means that she is still on the schedule for a January 27th pancreatectomy, and, once that is done, for an excision of the malignancy on her ilium. In the best case scenario, this would leave her
cancer-free, but no one is talking about what the odds are, although her
primary oncologist has made it clear that he is subjecting her to a much more
aggressive treatment than usual.
You might think that I would be jumping up and down with joy about now, but after months of unremitting tension, I’m so exhausted that I feel numb. Although our excellent news might bring me more relief than jubilance, I know that my misery would be boundless had the PET-Scan shown a new tumor.
I am sincerely grateful to all those who have emailed, sent gifts, brought food, come to visit, listened to our fears, offered to stay with us, held us when we cried, loaned us medical equipment, sent greeting cards, offered encouragement, and insisted that we come up with some way that they could help. Although I’m often too busy, too distracted, and too exhausted to show gratitude for this bounteous outreach, I am acutely aware of the fact that those who offer it are literally enabling us to survive a life-or-death ordeal. Perhaps there are people who can face such crises without the generous support of others, but I am not among them.
Peggy's Surgery
As I see it, the two hardest things about Peggy's illness are as follows: We’ve lived the past eight months in such unrelenting hope and dread regarding the outcome of the latest test, exam, or procedure, that we are finding it increasingly hard to function. For example, we’re frugal people with an environmental awareness that has always kept us from throwing away food, yet we are now composting food daily, partly because we shop in forgetfulness of what we already have. We are also having trouble cooking meals and getting chores done. I used to clean our entire house in a day. Now, it takes the two of us so many days that we’re lucky if we get the bi-weekly job done before it’s time to do it again. We also lose things; we make stupid mistakes; we are unable to follow conversations; and we forget things that were just said or done. These problems are worse for Peggy because of the chemo, but they're bad for me too.
At least we have good support; Peggy through local friends and through friends in the local, state, and national clothing button societies (one of whom offered to come from a distance to stay with her); and me through my blog, through a Diocese of Oregon online support group, through St. Mary’s Episcopal Church, and through friends and relatives with whom I correspond. Then there's the support that we both receive through our photographer friend, Teddie, who is documenting our long marriage.
Why Am I an Episcopalian?
A few weeks later, Sherry and I entered another empty church. It was an Episcopal Church, and I hadn’t seen anything so beautiful since attending a Catholic wedding at age six. Again, someone followed us in, only this time the new arrival was the church’s priest who welcomed us warmly and told us to stay as long as we liked. These two experiences epitomize the difference between churches obsessed with sin and churches that focus upon love.
I look forward to church all week. In my imagination, I watch myself enter the sanctuary; remove my hat; dip my finger in holy water; make the sign of the cross; walk to my accustomed pew; bow to the altar; kneel; make the sign of the cross a second time; silently recite the Gloria, the Sanctus, the 23rd Psalm, the Apostles’ Creed, or another recitation; and make the sign of the cross a third time. As the organ booms and the procession makes its way to the altar, I stand and bow to the passing cross. I am very happy.
Here are some of the scores of things that I love about the Episcopal Church: Liturgy; chanting; vestments; incense; confession; absolution; holy water; Paschal candles; participatory worship; holy oil; saints’ statues; kneeling rails; processional crosses; midnight masses; decorative altars; priestly blessings; seasonal colors; Holy Week; diverse beliefs; baptismal shells; ornate architecture; 33-bead rosaries; stained glass windows; the church calendar; the seven sacraments; the Book of Common Prayer; thousand year old music; marble baptismal fonts; palm crosses; ashes on my forehead; the consecration of the host; the blue sanctuary lamp; readings from the Bible and the Apocrypha; people who love the Episcopal Church as I do; words for the many objects employed in worship (e.g. stoup, thurible, aumbry, aspergillum, sanctus bells, and best of all, purificator); taking part in a beautifully written ancient ritual that unites a community of diverse people; the knowledge that this ritual is being repeated in Episcopal Churches all over the country, and, to a lesser extent, the worldwide Anglican Communion.
Despite my love for the Episcopal Church, I can no more assent to every catechismal claim than I can assent to every claim made by a political party, and so it is that when I recite the creeds, I’m not expressing agreement but affiliation. Few people demand that the words to every poem and the lyrics to every song have rational justification, nor is that the spirit in which I approach worship. As the voices of the congregation unite in chanting the 1,300 year old Gloria or the even older Sanctus, I sometimes reach for my bandana while reflecting that the people who love these things are the people among whom I belong, if I belong anywhere. The Episcopal Church provides me with an experience of beauty and worship unrelated to rationality. For me, the meaning of worship is to be found everyplace but a dictionary.
I am a Christian by culture and heredity. I have ancestors who were clergymen. A Cumberland Presbyterian minister on my mother’s side owned slaves, and an Episcopal ancestor on my father’s side built a chapel that still stands on his Virginia plantation. I now wish to enlarge upon some things I said in my last post... The people of my childhood believed that I too would preach, but doubts about God’s goodness—and later his existence—which started at age eleven only deepened. Yet, I continued to seek God through college courses in Bible and theology. I also sought God through hallucinogenics and by visiting over fifty Christian denominations, a Bahai temple, a Buddhist temple, a Quaker Meeting, two Jewish denominations, a Self-Realization Fellowship, a Hare Krishna farming commune, the massive Hare Krishna temple in West Virginia, and probably others. I accumulated religious institutions like movie cowboys accumulate notches on their six shooters, but never did I consider joining a non-Christian religion because, with the exception of an 18th century African grandmother, Christianity has been my heritage for the better part of 2,000 thousand years.
The Episcopal Church prides itself on an inclusivity that extends beyond external differences like race and income to include internal differences like disagreements over Scripture. The question then becomes where to draw the line? Would it not be hypocritical for the church to say, “We’re fine with you not believing in eternal hell, literal angels, the virgin birth, Christ’s miracles, and a blood atonement, but if you want to worship with us, you must believe in the supernatural, although we can’t tell you what that means or prove to you that it exists.” Such a requirement would reduce the supernatural to a mere password that neither the church’s most prominent bishop of recent years, John Spong, nor its most prominent theologian, Marcus Borg, could in good conscience embrace.
Over the years, I’ve told four Episcopal priests at two churches that I wanted to attend their church but that I saw no reason to believe in the supernatural. Three of the four said I was welcome to to participate fully regardless; one of them explaining his approval by saying that I wouldn’t want to come if God didn’t want me to be there. As seen from the inside, my desire to attend is so strong that it truly is reminiscent of the behavior of metal in the presence of a magnet. Of course, I would explain this by saying that my life goes better when I worship, and church is among the places that best elicits such a response.
I have been strongly drawn to the Episcopal Church for 58-years, yet I have for the most part struggled against that desire, and it takes but little rejection on the part of churchgoers for me to stay home. The fourth priest was the first in whom I confided. Ted was his name (this was in 2012), and he was rector at St. Mary’s, my current church. After I had attended faithfully for months, he encouraged me to come in for a talk. As we spoke, I told him about my beliefs, and he suggested that I didn’t belong at St. Mary’s. On another occasion, a member in whom I confided said, “Given that you don’t believe in God, I don’t know why you’re here.” I attended another Episcopal Church for awhile, but my heart was at St. Mary’s, so when Ted retired after 29-years at St. Mary’s, I returned with the approval of the new priest, Bingham (Ted still lived nearby, but was housebound because his wife was ill).
However, I eventually fell prey to cognitive dissonance from aligning myself with an institution that, in my view, is founded upon mythology. After attending for the better part of a year, I left a second time. That was three years ago. Last winter, I found myself wanting to return but hesitated because of my poor track record. When Peggy received her cancer diagnosis in late May, I knew I wouldn’t survive her death without strong support, and that meant church. I now have two Episcopal friends (Tom and Bob) who have promised to support me should Peggy die, plus I attend an online support group through the Episcopal Diocese of Oregon. Cognitive dissonance no longer seems important.
After Ted’s wife died last year, he started attending church regularly. I wanted to make peace with him, but when he gave no indication of remembering me, I decided against talking to him about the past. However, I very much longed for reconciliation because Ted is more than one parishioner among many; his popularity is such that St. Mary’s named its dining room after him. More importantly, I wanted reconciliation for both our sakes. I quote from Matthew 5: 23-24:
“If you are offering your gift at the altar and there remember that your brother has something against you, leave your gift and go. First be reconciled to your brother, and then come and offer your gift.”
During the weekly “Passing of the Peace,” people walk about shaking hands and wishing one another peace. Two Sundays ago, I spontaneously crossed from my side of the sanctuary to the side where Ted sits. By the time I reached him, the many people who wanted to shake his hand had left. I grasped his hand, looked him in the eye, and sincerely said, “Peace be unto you, Ted.” He returned the peace as I had given it. Last Sunday, I crossed the sanctuary again, and this time he greeted me with a priestly blessing. I took that to mean that he remembers me, and that he accepts my presence.
I earlier mentioned another person in whom I had confided, one who said, “Given how you feel, I don’t know why you’re here.” I didn’t respond at the time because I interpreted her comment as a criticism rather than a question. I will now approach her words as though they were a question: (1) I attend the Episcopal Church because Anglicanism originated in the 1500s, and I am irresistibly attracted to institutions that are old and venerable; (2) I attend the Episcopal Church because it puts me in contact with the holy, by which I mean objects, places, creatures, and activities, that instill in me extraordinary feelings of acceptance, wholeness, and appreciation; (3) I attend the Episcopal Church because it values love, beauty, nobility, inclusivity, and compassion; (4) I attend the Episcopal Church because it offers a permanent source of community; (5) I attend the Episcopal Church for the numerous aesthetic reasons listed earlier; (6) I attend the Episcopal Church because it is the most liberal church that has maintained a strong connection to Christianity; and (7) I attend the Episcopal Church because it is among the very few churches that welcome me without expecting me to I change.
Growing Up in a Cult
I have often written about growing up in Mississippi in the fundamentalist Church of Christ and of having my first serious doubts about God’s goodness at age eleven and about his existence three years later. I want to approach the subject from a different angle, but I will first need to lay some groundwork.
I found it exceedingly hard to escape the Church of Christ, not just because it had been my primary social and religious outlet my entire life, but also because I had been told that no people are more miserable than those whom seek to avoid God’s purpose for humanity, which is to belong to the Church of Christ.
During the seven years that transpired between my first doubt and the day, at age 18, when I abandoned the Church of Christ for the Episcopal Church, I did everything in my power to regain my faith. I sang, preached, and served saltines and grape juice to neighborhood kids from behind a packing box pulpit decorated with wisteria. When I outgrew that, I started preaching for real at age fifteen. I also led singing; presided over the communion table; and attended one Church of Christ service or Bible study or another up to nine times a week. I was enormously honored when different ministers invited me to accompany them to revivals they were preaching in Kentucky and Indiana. Yet, within my heart, my dedication to the church continued to drop ever lower, and I was too ashamed to tell anyone. To make matters infinitely worse, I came to believe that, because I had cursed God in a fit of rage for denying me the “gift of faith” at age twelve, I had committed the vaguely defined unpardonable sin. It’s a wonder that I maintained my sanity, torn as I was between no longer believing in God, yet knowing that he would torture me day and night for all eternity if I were wrong.
By age 17, I concluded that my problems with the Church of Christ were its fault, not mine, so I sought to liberalize the church by writing articles for the church newsletter, none of which were published or discussed. At age 18, I began a multi-year period of serious church-shopping during which I visited over 50-denominations (plus several non-Christian groups), but my heart was with the Episcopal Church from the day I first walked into one. After I switched, Church of Christ people I had known and loved my entire life shunned me. Surprisingly, not a single person bothered to ask why I had left. I interpreted the implication that my immortal soul wasn’t worth an hour of anyone’s time as a profound rejection.
I want to spend the remainder of this post doing something I have never done, which is to describe the beliefs and practices of the fundamentalist Churches of Christ, which is the group's formal name. This will be challenging because of the church’s numerous divisions. For example, some congregations use multi-tiered trays to serve communion wine (or grape juice) while others use a single glass. Other rifts have occurred over instrumental music, the permissibility of women Sunday school teachers, support for foreign missionaries, and the use of church buildings for non-religious activities. There being no minor differences within the Church of Christ, the more conservative of these groups accuse the more liberal ones of “willful disobedience to God” and assures them that they will spend eternity screaming in well-deserved agony. The Church of Christ as I knew it...
...considers itself God’s one true, eternal, and unchangeable church;
...considers itself “the only path whereby man might be saved”;
...believes that God will guide all sincere seekers to the Church of Christ regardless of when and where they live, and that all who are not guided to the Church of Christ will suffer eternal torment in hell;
...denies the possibility of honest mistakes in religious belief and practice;
...relies solely on the Bible for doctrine and practice;
...insists that persecution had driven it underground for the 1900 years prior to its modern appearance in 1906;
...holds that churches that go by any name but the Church of Christ are in rebellion against God;
...considers the Bible an error free guide to science, history, and the will of God;
...holds that salvation comes through faith and works;
...the Sunday morning service consists of extemporaneous prayers, hymns from the turn of the 20th century, and the Lord’s Supper, which is seen as a memorial to Christ (as opposed to consubstantiation and transubstantiation, which are the view of the Episcopal Church and the Catholic Church, respectively).
...expresses a special hatred for: liberals; for “Godless college professors who rob Christian boys and girls of their souls;” for the Catholic Church (“the whore of Babylon”); and for any church resembling the Catholic Church (particularly the Episcopal church);
...is mostly Trinitarian but doesn’t use the word Trinity because it isn’t found in the Bible;
...holds that sermons about love are optional but that weekly sermons about hell—followed by one or more altar calls—are obligatory (these sermons so terrified me as a child that I would hide under the bed when I got home);
...is anti-science, anti-intellectual, and suspicious of higher education except at Church of Christ Bible colleges;
...practices immersion-only baptism starting at age 12;
...holds weekly communion (Mogen David Wine and Matzo crackers) for baptized members;
...practices congregational rule without denominational oversight;
...denies being a denomination;
...denies women the right to preach, teach Sunday school, make announcements, openly ask questions, or serve as elders;
...believes that instrumental music in church is anathema to God;
...has no licensed ministry;
...members call one another Brother ____ and Sister ____;
...has no special titles for ministers but commonly refers to them as Preacher ____;
...believes that churches that call themselves the Church of Christ, but don’t believe or practice like one’s own Church of Christ are in willful rebellion against God;
I spent enough time with ministers that I was privy to many of their informal religious debates, which I will offer as further illustrations of the church’s mindset. In one debate, opinions varied regarding the fate of a theoretical person who “accepted Christ into his heart, but died in a car wreck on his way to be baptized.” (This question came up during a revival that was being held at a country church that had no baptistry, making it necessary for the candidates to be taken to a town church that did.) Another debate concerned the minimum age at which God will cast a non-Church of Christ child into hell. There were also debates over the fate of a Christian (i.e., a member of the Church of Christ) who died without having begged God’s forgiveness for his or her latest sin.
Yet another debate occurred between two Church of Christ preachers and a 13-year-old Methodist girl (this was possible because she had attended a Church of Christ skating party with a friend). She knew her Bible well, and this enabled her to swap verses in a debate over whether salvation comes by faith alone or by a combination of faith and works. The preachers’ admiration for her knowledge (if not her courage) was evident, and no one could have seriously argued that she was in willful disobedience to God, yet according to Church of Christ doctrine, she was nonetheless destined for hell.
Then there was a long ago night in Georgia when my elderly relative named Carrie told Peggy that she and her entire Southern Baptist family were going to hell if they didn’t join the Church of Christ. I had warned Peggy that such a view is consistent with Church of Christ doctrine, yet Carrie’s words left Peggy in tears as surely as a slap in the face would have done because no one had ever said such a thing to her, and because she was hearing it from someone whom appeared to like her and had treated her kindly.
Not everyone who leaves the Church of Christ as I did carries lifelong scars. My two sisters left without regret, and my brother [who lives near you in Sour Lake, Texas] wasn’t even perturbed when the Church of Christ disfellowshipped him for performing music in nightclubs. My siblings were able to escape unscathed because they had managed to keep the Church of Christ at the periphery of their lives (Peggy did this with the Baptist Church) whereas the Church of Christ became my life during early childhood when I accepted its claim that I would be forevermore miserable if I left it, and that I would incur hellfire twice over if I were to later join another church. In the eyes of the Church of Christ, I could have hardly done worse than to join a church that owes its existence to a wife-beheading 16th century British king.
Thanks to the Church of Christ, I spent much of my childhood in terror, and when adults do that kind of thing to children, they should suffer for it. I tell myself this, but because my father’s father and his father were Church of Christ preachers, I don’t know if I believe myself. I try to find peace with my anger by telling myself that they (along with my parents, friends, and preachers), meant well, but that seems too low a bar when it comes to intentionally terrifying children, not just once or twice, but multiple times a week from birth until adulthood.
I will devote my next post to the Episcopal Church.
Panceatic Cancer, Part 9: An Update
I asked Peggy in advance for permission to take a picture of her and Marc. When she said no, I persisted, and she objected that Marc wouldn’t want his picture made. I considered this unlikely, but he went me one better by suggesting that his assistant take it so we could all appear. When Marc read her shirt, he said, “I take full credit.” Perhaps he meant to say that she looks good, as indeed she does, although I thought she looked better when she had no hair at all.
Within minutes of meeting Marc for the first time, he said that choosing palliative care only would be a reasonable option, and that if she did so, she could expect to live six months. That was four months ago.
As always, he warned her that the chemo will eventually stop working, or that her body will cease to tolerate it. She wished that he hadn’t said this on the happiest day since her diagnosis.
Yesterday, she had her seventh chemo and her second bone strengthener. It's such a terrible combination to endure that she prepared for it by taking an Ativan. She has a number of drugs that many people would kill for, but she rarely takes them.
Peggy Lose Her Hair but Has Exceeedingly Good News
Peggy is sick in bed following her fifth chemo yesterday (the photo predates her hair loss). Despite never feeling normal and being dogged by the shooting stomach pains that accompany pancreatic cancer, her prescribed ten minute walks have grown into an hour-long affair, and she is back to working out with weights.
I had a friend named Mina who stopped chemo because she believed Jesus had cured her of breast cancer. A popular Methodist lay minister, she convinced enough people that she was cured that she was interviewed on the evening news. Then the cancer killed her, and the evening news remained silent. I also have a Christian friend who is cancer free five years after being told that she would die within the year. As did Mina, she credits Jesus. Then there was the wife of my father-in-law’s preacher who refused medical care for skin cancer because she believed God when he said: “The prayer of the faithful will heal the sick.” When her pain became unbearable and she could no longer eat, surgeons removed her lower jaw and other parts of her face, after which followed a lingering death. Except for Peggy and me, almost everyone who knows of Peggy’s illness has promised to pray for her, and no doubt some of them will interpret her good news as proof that prayer works.
Every other Monday, Peggy has blood tests followed by a consultation with Marc, her oncologist. On Thursday of the same week, she returns for chemo. This Monday, Marc announced that she is tolerating chemo so well that he plans to keep her on the same high dose. He also said that her CA-19 (pancreatic tumor marker) has dropped from +5,000 to 760, and hinted that she might be among the 3% of patients who survive for five years. As good as all this sounds, Peggy later wondered how she can bear taking chemo for the rest of her life. Despite her fear, she, like Jiminy Cricket, has long vowed to live to 103 to see what such an advanced age feels like, and she rejoiced that the possibility of her keeping her word is once more within the realm of believability
Following her second treatment, Peggy’s hair started falling out, so rather than have it look ever more mangy, she had me cut it. This didn’t do either of us any good, her for obvious reasons, and me because, no matter how gentle I tried to be, she kept lunging forward and yelling, “Ouch!” By the time we were done, I was a trembling wreck, although I felt some better after she admitted that her scalp had been hurting all day. When the clippers finally fell silent, she contemplated herself in the bathroom mirror for a long moment before announcing, “At least, I have a nicely shaped head.” In terms of resiliency, she’s surely stronger than I, and I doubt that the very few people who beat pancreatic cancer have anything going for them that she lacks.
I’ve since told her scores of times that she’s as lovely as ever and that she doesn’t need to cover her head for my sake (I enjoy kissing it) either at home or abroad. She initially found this hard to believe, but even if I could pull off lying a few times, I couldn’t get away with lying everyday, which is what it would take due to my habit of frequently complimenting her appearance.
I just heard the clanking of umbbells, marking this as the first time Peggy was able to lift weights the day after chemo. Meanwhile, Sage, our sole tabby since Brewsky died, is beside me asking for a belly rub. If he ever needs chemo, I doubt that he’ll look good without hair.
The Manner of His Death; Might I Have Saved Him?
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| Brewsky (front) and Ollie |
The vet clinic was filled with big noisy dogs and an assortment of noisy humans, so the three of us were taken to a tiny examining room in the afternoon sun. The outside temperature was 102 (39 C), yet the clinic’s staff—like all staffs at all clinics—were determined to keep the door shut. In human clinics, they do this “to protect patient confidentiality,” but a tech in Brewsky’s clinic explained that she didn’t want any Dobies or Rotties to kill our cat. I said that such an attack would at least save us the cost of euthanasia. When we finally insisted that she leave the door open, she did, plus she brought us two small fans.
Veterinarian Jenny attributed Brewsky’s rapidly deteriorating condition (two weeks earlier, he had been playing like a kitten) to something other than kidney failure, but she didn’t know what, just that it boded poorly for his odds of survival. When she pressed his belly in various places, he cried, and she and Peggy speculated that he might have cancer. Jenny said she could admit him to the hospital, start a drip, and run a great many tests, but she was clearly pessimistic. On the way to the clinic, Peggy and I had talked about what to do in the face of such a proposal, and we agreed that we wouldn’t allow it.
Because he appeared to be free of pain, I wanted Brewsky to die at home, something which I thought would occur in hours since he hadn’t had a drink of water in over two days. Jenny said that he could experience a great deal of pain in the final stages of dying, and Peggy shared her concern. It was not a situation in which I could allow myself the least possibility of error, so I agreed to have him euthanized. As with the three other pets whom we’ve had euthanized, we stayed to witness his death, which occurred with his head resting in Peggy’s hand. Peggy sobbed; I steeled myself not to cry.
When we got home, we lay Brewsky in the den so the other cats could see him, our hope being that they could handle their loss better if they saw his body as opposed to having him simply disappear. After showing an initial interest, they returned to behaving as normal. Having never seen a grieving cat, we didn’t know what to think.
Peggy had wanted her friend, Shirley, to attend the funeral, but Shirley couldn’t come. When Peggy expressed hurt that Shirley hadn’t suggested burying him the next day, I reminded her that Shirley is both loving and generous, and that it probably didn’t occur to her make such a suggestion. Peggy then decided to go ahead with the burial without Shirley, so we wrapped Brewsky in a striped pink and white towel and put a toy between his front paws. I might have read a portion of the Episcopal burial service had I not anticipated Peggy’s disapproval. We instead simply hugged, put away our tools, and left Brewsky alone for his first night out of this house since kittenhood.
The next morning, the cats hardly ate, and all four of them sat in middle of the living room floor looking sad and distracted. On the second morning, ten-year-old Ollie (who had spent all but his first three months of life sucking Brewsky’s nipples) conducted a thorough search of the house, and Scully took Brewsky’s place by cuddling with Peggy while Peggy did her workout with dumbbells. Perhaps it’s true that even if our cats know what death is, they don’t know it’s permanent.
We spent Brewsky’s last weekend holding moistened fingers to his lips, presenting him with various canned foods, and giving him an appetite stimulant that was prescribed on Friday, all this in a desperate attempt to get him to eat and drink. When our efforts failed, I went to the drug manufacturer’s website to check on the dosage for the appetite stimulant, and found that the only dosage listed for any cat of any size, age, or ailment, was three times what we were giving. We then tripled his dosage, but it made no difference.
Nine days after he died, Peggy and I are wracking our brains over whether we could have saved him. During his last weekend, I must have thought a hundred times about taking him to the ER, and I’m ashamed to say that if money hadn’t been a factor, I would. Yet, money wasn’t the only factor or even the main factor. Less than a year ago, we took two cats to the ER at once, but they weren’t 15-years-old, and they hadn’t been to the vet’s twice in less than two weeks during which time Peggy had three phone conversations with the vet. If I could go back in time, would I take him to the ER? I probably would, but do I think it would saved him? No. I would mostly be doing it so I wouldn’t feel like I had failed my cat, but then I could say the same about whether I should have put him in the hospital instead of having him killed. Next to Peggy, there isn’t a creature on earth who I love more than I loved that cat, and it’s awfully sad to be without him.
Pancreatic Cancer Part 8: Never a Happy Day: Preparing to Bury Our Beloved
Our world turned upside down on May 19, when a physician’s assistant silently walked into an examining room, handed Peggy the results of an MRI which contained the words “probable metastatic process,” and walked out. That day marked the end of either of us being happy for more than minutes at a time. Ours is such a hard way to live that I've often had the thought that there probably aren’t many ways that are harder.
Then, two weeks ago, things got harder when our fifteen-year-old tabby, Brewsky (the big cat in the photos), was diagnosed with stage two kidney failure. Before adopting him, Peggy so hated cats that she had nightmares of being pursued by unstoppable cat demons. Then our little black schnauzer died, and Peggy surprised me by suggesting that we visit the pound the very next day to look for a new dog. When the pound had nothing that suited us, Peggy surprised me a second time by saying. “Let’s visit the cattery.” Six-month-old Brewsky was the first cat we saw, and Peggy had no interest in seeing see another. Her nightmares of cats never returned.
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Despite doing everything that I could do short of violence, his disobedience continued. Then came the night that he suddenly stopped running, rolled onto his back, and looked me in the eye as if to ask, “What are you going to do now, Mr. Bad Man, beat me to death with your yardstick?” “You bastard, I never scared you for a moment did I?” I said as I dropped the stick and lay on the floor to pet him. Thus began a nightly ritual that continued for many months until he lost interest.
Brewsky soon matured into a mellow and confident 15-pounder who has since foster parented four other kittens, one of whom he has literally “nursed” since 2015. He has also, at times, served as a parent to the humans of the household, which might be why, after being diagnosed with pancreatic cancer, Peggy said to him and him alone, “Brewsky, you’ve got to help me beat this thing.” Two weeks ago, we took him to the vet with what we thought was a simple respiratory infection and were told that he also had stage two kidney failure. After telling the vet of her own illness, bald-headed Peggy, said, “You’ve got to save my cat; I need my cat to survive.” Since then, Brewsky has stopped bathing, vomited blood, become incontinent, and stopped eating or drinking.
Tomorrow, we’ll take him to the vet for what might be his last visit. I started digging his grave yesterday but had to stop because every shovelful was harder than a day’s work. The only good thing I can say about losing Brewsky is that neither Peggy nor I will have to grieve alone, as will happen when she and our other cats die, assuming, of course, that I don’t die first. As much as she would hate to lose me, Peggy wouldn’t choose to die in my place, as I would for her. That’s how nature intended for husbands and wives to behave, and I’m very sorry that I can’t let nature have its way.
When Peggy is gone, I will have no one to share my days with; no bald head to kiss; no one to call beautiful; no one to share meals and music with; no one to watch old movies and TV shows with; no one to hold me in bed when I cry; and no one with whom to share decades of memories. People might bring food, tell me how sorry they are for my loss, and ask what they can do, but I can hardly ask for the thing I need most, which is for someone to stay with me indefinitely, to listen to my memories of 54 years of marriage, and to hold me in bed when my heart is breaking. I can’t think of a single person who would do that. This makes the other things that people do seem scripted, as though they are playing a role that says, “You can go close but not too close.”
When Brewsky dies, mine and Peggy’s spiritual father and the adopted father of our other cats’ will be gone for all time, and the nightmare that we are already facing will be many times more painful. And to think that we got cats in the belief that we wouldn’t suffer much when they died, the way we had with dogs.
Pancreatic Cancer Part 7: Discouraging News: the Horrors of Chemo
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“Long-term remission in advanced disease is still rare but not impossible, particularly for fit patients treated at high-volume centers with access to clinical trials and personalized therapy... Although traditionally seen as incurable, a small but growing number of patients with metastatic pancreatic cancer are achieving partial or even complete remission with modern systemic therapies.”
As for how these characteristics apply to Peggy, prior to her disagnosis, she ate well, kept her weight down, lifted dumbbells three days a week, and took a strenuous uphill hike three days a week. She is also receiving treatment from a the Southern Willamette Valley's busiest cancer center, which offers access to personalized therapy. If anyone can tolerate the misery of chemo, Peggy is that person thanks to a strength and fortitude that have often left me in awe. (My friend, Hollis Shostrom, loaned Peggy a wheelchair, but in the photo, she is shopping for the walker that she already needs.)
Pancreatic Cancer: Part 6: A Devastating Phone Call: Feelings of Loneliness and Betrayal
The photo is horrible, but despite the fact that it doesn't portray Peggy as the lovely woman that she is, it does speak to the hideousness of what our lives have become.
I want to describe Peggy's condition in some detail because I have unknowingly led various people to think that she is worse off than she is. Here is what I can say about her... She walks slowly; her pain appears to be worsening by the week, if not the day; she complains of feeling cold when other people are hot; and she is becoming progressively weaker and less active. However she can still cook, do light housework, take short walks, and find enjoyment in life. Tomorrow morning, she will attend one of her button club meetings, after which she will go with me to Albany (60 miles up the road) where I am to have a sleep study, and she's to spend the night with a friend. Neither of these things will be easy for her, but at least her friend is someone for whom she feels no need to put on a brave front.
Last week was filled with doctors' appointments and medical procedures. On Monday, I finished up a two day root canal. On Tuesday, a radiation oncologist tattooed her ilium so he can hit within a millimeter of his target when he begins external beam radiation therapy on June 25, her 74th birthday. On Wednesday, she was lying in an operating room when her nurse's knowledge of medical terminology enabled her to realize that her surgical oncologist was about to biopsy the wrong part of her ilium (the crest instead of the acetabulum). On Thursday, a second surgical oncologist installed a port-a-cath in her chest. All of her procedures required a five hour stay in a hospital or clinic, and some of them required that we get out of bed five hours before our regular time.
Within weeks, Peggy has gone from someone who would refuse to admit to pain even when she was obviously suffering, to someone who, when asked by a nurse on Thursday, to place her pain level on a scale of one to ten, labeled it an eight. It scares me greatly to know that she has far worse pain ahead of her, although, be that said, Vicodin is the strongest pain reliever that she has, and she only takes it at bedtime--she takes acetaminophen throughout the day). No doubt she could get stronger drugs if she wanted, but she can't admit to needing them.
Yesterday, (Sunday the 22nd) her regular oncologist called to say that the results from Wednesday's biopsy showed that the lesion on her ilium did indeed come from her pancreas, instead of being primary bone cancer or a benign tumor. This means that her cancer remains a stage four pancreatic adenocarcinoma for which a pancreatectomy (pancreas removal) is pointless. Over the seven weeks since we saw the words "possible metastasis" on an x-ray, Peggy and I have grabbed onto one hope after another only to see them all shot down. As of today, our hope is that chemotherapy will succeed so spectacularly that a pancreatectomy will once again be an option. I have no idea if this ever really happens, but when the oncologist seemed to hint that it does, we clung to his words. One good thing I can say about our experiences so far is that her five doctors have shown us every consideration.
Peggy is back in contact with her older sister, Dianne, with whom she ended contact when Dianne shat on me after I suggested that she, her husband, and Peggy's younger sister, Pam (all of whom are right-wing evangelicals), and I form a support group for the benefit of all. My request for help struck both sisters as unmanly, with the younger one telling me to "get over yourself," and Dianne calling me weak; accusing me of wanting to start a "pity party;" saying I lied when I wondered whether my emotional pain was as greater or greater as Peggy's emotional pain; and, to top it all off, blocking me from calling her (which I had never done), and telling Peggy that she never wanted to hear from me again.
Peggy was furious at both sisters for the way they treated me, but Pam is out of touch because she went on an extended vacation to Europe immediately after attacking me. It's a different matter with Dianne, however, and Peggy responded by ending contact with her. After a week of this, she called Dianne to tell her how mad she was over Dianne's treatment of me, Dianne said that I alone was to blame and hung-up on her. After that, I was floored to realize that their harmonious correspondenc had resumed without another word being said about Dianne's behavior. It was as though Peggy had told her, "Shit on my husband all you want, Dianne, and while I don't like it, I won't let it affect our relationship."
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| Before the Nightmare |
When two longtime friends visited us yesterday, Peggy explained the situation by saying that both Diane and I had acted badly, and that the situation is irremediable. I sat stunned because a week earlier Peggy had admitted that I had acted in good faith, and that Dianne had not. Truly, I tried my best to handle the situation well: I did everything I could to make my relationship with Dianne work: and I am still open to doing everything I can to make my relationship with Dianne work. After lying awake last night trying to understand her reversal of opinion, I remembered her words, "My world is falling apart, and to survive what I am going through, I need my relationship with my sisters to be normal." I can but take this to mean that Peggy needs to pretend that Dianne is not the mean-spirited, dishonorable woman that she believed her to be a week ago.
Peggy also explained her recent embrace of Dianne in this way, "I love Dianne, but I love you too," as though Dianne and I hold an equal place in her affection, despite the fact that I'm the one who will be caring for her and suffering alongside her for however long she lives while Dianne's life can proceed as usual 3,000 miles away, where she can be certain of her sister's acceptance no matter how badly she has treated me. I find humor in the fact that this woman who accuses me of being weak is note-worthy for her fear and timidity, but then in her right-wing evangelical world, women are allowed to be weak. In her case, this means that her unwillingness to get on an airplane will probably prevent her from seeing her sister again.
It's hard to survive what we're going through without also feeling that Dianne is standing between us, and that she won't move an inch to remedy the harm that she is doing to the sister she claims to love. Until two days ago, Peggy had a figurine of two sisters who were sitting on a bench with their bodies touching. That figurine was atop a low bookcase that stands between her room and mine, and every time I would pass it on my way to the bathroom at night, I would reflect upon the fact that Dianne is not only between us all day, she is symbolically between us all night too. Four days ago, I moved that figurine, and while this hurt Peggy very much, she didn't put it back. Yet, in her heart, I' sure it's still there.
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| Breakfast on June 2 |
For Peggy's sake and my own, I have to put my feelings of hurt and betrayal aside, but despite the fact that doing so is both honorable and necessary, I have no idea how to proceed. I just know that I'm dealing with two heartbreaks, the heartbreak of Peggy's almost certain death, and the heartbreak of Peggy having given her tacit approval to me being abused by a woman whom I believe to be Peggy's primary source of emotional support.
While I can certainly do an enormous amount of practical good for Peggy, I can't believe that she would treat me as she has unless the emotional support that I offer is, in her mind, inferior to what Dianne offers. Just as Dianne was her chief support when they were children, she is better suited than I to fill that role now that Peggy is desperate to feel like a child in the arms of her mother. This means that I am on the outside, and that can't allow myself to look for emotional support from someone who has traded what I have to offer for what another can give. It's not a question of whom Peggy loves more, but of whom she is closest to in this horrible crisis, and I want that person to be me.



















